HEALTH AND HUMAN DEVELOPMENT
SELF-MANAGEMENT AND THE HEALTH CARE CONSUMER
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HEALTH AND HUMAN DEVELOPMENT JOAV MERRICK - SERIES EDITOR – NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT, MINISTRY OF SOCIAL AFFAIRS, JERUSALEM Adolescent Behavior Research: Health and Happiness from International Perspectives Meaningful Work: Joav Merrick and Hatim A. Omar Research in Quality of Working Life (Editors) Søren Ventegodt and Joav Merrick 2007. ISBN: 1-60021-649-8 (Editors) 2009. ISBN: 978-1-60692-820-2 Complementary Medicine Systems: Obesity and Adolescence: A Public Comparison and Integration Karl W. Kratky Health Concern 2008. ISBN: 978-1-60456-475-4 Hatim A. Omar, Donald E. Greydanus, (Hardcover) Dilip R. Patel and Joav Merrick (Editors) 2008. ISBN: 978-1-61122-433-7 (E-book) 2009. ISBN: 978-1-60456-821-9 Pain in Children and Youth Patricia Schofield and Joav Merrick (Editors) 2008. ISBN: 978-1-60456-951-3 Challenges in Adolescent Health: An Australian Perspective David Bennett, Susan Towns, Elizabeth Elliott and Joav Merrick (Editors) 2009. ISBN: 978-1-60741-616-6 (Hardcover) 2009. ISBN: 978-1-61668-240-8 (E-book) Behavioral Pediatrics, 3rd Edition Donald E. Greydanus, Dilip R. Patel, Helen D. Pratt and Joseph L. Calles, Jr. (Editors) 2009. ISBN: 978-1-60692-702-1 (Hardcover) 2009. ISBN: 978-1-60876-630-7 (E-book)
Poverty and Children: A Public Health Concern Alexis Lieberman and Joav Merrick (Editors) 2009. ISBN: 978-1-60741-140-6 Living on the Edge: The Mythical, Spiritual, and Philosophical Roots of Social Marginality Joseph Goodbread 2009. ISBN: 978-1-60741-162-8 Alcohol-Related Cognitive Disorders: Research and Clinical Perspectives Leo Sher, Isack Kandel and Joav Merrick (Editors) 2009. ISBN: 978-1-60741-730-9 (Hardcover) 2009. ISBN: 978-1-60876-623-9 (E-book)
Rural Child Health: International Aspects Erica Bell and Joav Merrick (Editors) 2010. ISBN: 978-1-60876-357-3 (Hardcover) 2010. ISBN: 978-1-61324-005-2 (E-book)
Adolescence and Sports Dilip R. Patel, Donald E. Greydanus, Hatim Omar and Joav Merrick (Editors) 2010. ISBN: 978-1-60876-702-1 (Hardcover) 2010. ISBN: 978-1-61761-483-5 (E-book)
Advances in Environmental Health Effects of Toxigenic Mold and Mycotoxins- Volume 1 Ebere Cyril Anyanwu 2010. ISBN: 978-1-60741-953-2
International Aspects of Child Abuse and Neglect Howard Dubowitz and Joav Merrick (Editors) 2010. ISBN: 978-1-60876-703-8 (Hardcover) 2010. ISBN: 978-1-61122-049-0 (Softcover) 2010. ISBN: 978-1-61122-403-0 (Ebook)
Children and Pain Patricia Schofield and Joav Merrick (Editors) 2009. ISBN: 978-1-60876-020-6 (Hardcover) 2009. ISBN: 978-1-61728-183-9 (E-book) Conceptualizing Behavior in Health and Social Research: A Practical Guide to Data Analysis Said Shahtahmasebi and Damon Berridge 2010. ISBN: 978-1-60876-383-2 Chance Action and Therapy. The Playful Way of Changing Uri Wernik 2010. ISBN: 978-1-60876-393-1 (Hardcover) 2011. ISBN: 978-1-61122-987-5 (Softcover) 2011. ISBN: 978-1-61209-874-6 (E-book) Adolescence and Chronic Illness. A Public Health Concern Hatim Omar, Donald E. Greydanus, Dilip R. Patel and Joav Merrick (Editors) 2010. ISBN: 978-1-60876-628-4 (Hardcover) 2010. ISBN: 978-1-61761-482-8 (E-book)
Positive Youth Development: Evaluation and Future Directions in a Chinese Context Daniel T.L. Shek, Hing Keung Ma and Joav Merrick (Editors) 2010. ISBN: 978-1-60876-830-1 (Hardcover) 2010. ISBN: 978-1-61668-376-4 (E-book) Positive Youth Development: Implementation of a Youth Program in a Chinese Context Daniel T.L Shek, Hing Keung Ma and Joav Merrick (Editors) 2010. ISBN: 978-1-61668-230-9 (Hardcover) 2010. ISBN: 978-1-61209-091-7 (E-book) Pediatric and Adolescent Sexuality and Gynecology: Principles for the Primary Care Clinician Hatim A. Omar, Donald E. Greydanus, Artemis K. Tsitsika, Dilip R. Patel and Joav Merrick (Editors) 2010. ISBN: 978-1-60876-735-9
Understanding Eating Disorders: Integrating Culture, Psychology and Biology Yael Latzer, Joav Merrick and Daniel Stein (Editors) 2010. ISBN: 978-1-61728-298-0
Self-Management and the Health Care Consumer Peter William Harvey 2011. ISBN: 978-1-61761-796-6 (Hardcover) 2011. ISBN: 978-1-61122-214-2 (E-book)
Advanced Cancer Pain and Quality of Life Edward Chow and Joav Merrick (Editors) 2010. ISBN: 978-1-61668-207-1 (Hardcover) 2010. ISBN: 978-1-61668-400-6 (E-book)
Sexology from a Holistic Point of View Soren Ventegodt and Joav Merrick 2011. ISBN: 978-1-61761-859-8 (Hardcover) 2011. ISBN: 978-1-61122-262-3 (E-book)
Bone and Brain Metastases: Advances in Research and Treatment Arjun Sahgal, Edward Chow and Joav Merrick (Editors) 2010. ISBN: 978-1-61668-365-8 (Hardcover) 2010. ISBN: 978-1-61728-085-6 (E-book)
Principles of Holistic Psychiatry: A Textbook on Holistic Medicine for Mental Disorders Soren Ventegodt and Joav Merrick 2011. ISBN: 978-1-61761-940-3 (Hardcover) 2011. ISBN: 978-1-61122-263-0 (E-book)
Environment, Mood Disorders and Suicide Teodor T. Postolache and Joav Merrick (Editors) 2010. ISBN: 978-1-61668-505-8 Social and Cultural Psychiatry Experience from the Caribbean Region Hari D. Maharajh and Joav Merrick (Editors) 2010. ISBN: 978-1-61668-506-5 (Hardcover) 2010. ISBN: 978-1-61728-088-7 (E-book) Narratives and Meanings of Migration Julia Mirsky 2010. ISBN: 978-1-61761-103-2 (Hardcover) 2010. ISBN: 978-1-61761-519-1 (E-book)
Clinical Aspects of Psychopharmacology in Childhood and Adolescence Donald E. Greydanus, Joseph L. Calles Jr., Dilip P. Patel, Ahsan Nazeer and Joav Merrick (Editors) 2011. ISBN: 978-1-61122-135-0 (Hardcover) 2011. ISBN: 978-1-61122-715-4 (E-book) Climate Change and Rural Child Health Erica Bell, Bastian M. Seidel and Joav Merrick (Editors) 2011. ISBN: 978-1-61122-640-9 (Hardcover) 2011. ISBN: 978-1-61209-014-6 (E-book)
Rural Medical Education: Practical Strategies Erica Bell, Craig Zimitat and Joav Merrick (Editors) 2011. ISBN: 978-1-61122-649-2 (Hardcover) Advances in Environmental Health Effects of Toxigenic Mold and Mycotoxins Ebere Cyril Anyanwu 2011. ISBN: 978-1-60741-953-2 Child and Adolescent Health Yearbook 2009 Joav Merrick 2011. ISBN: 978-1-61668-913-1 (Hardcover) Public Health Yearbook 2009 Joav Merrick 2011. ISBN: 978-1-61668-911-7 (Hardcover)
Child Health and Human Development Yearbook 2009 Joav Merrick 2011. ISBN: 978-1-61668-912-4 (Hardcover) Alternative Medicine Yearbook 2009 Joav Merrick (Editor) 2011. ISBN: 978-1-61668-910-0 (Hardcover) The Dance of Sleeping and Eating among Adolescents: Normal and Pathological Perspectives Yael Latzer and Orna Tzischinsky (Editors) 2011. ISBN: 978-1-61209-710-7 (Hardcover)
Child and Adolescent Health Yearbook 2010 Joav Merrick (Editor) 2011. ISBN: 978-1-61209-788-6 (Hardcover) Child Health and Human Development Yearbook 2010 Joav Merrick (Editor) 2011. ISBN: 978-1-61209-789-3 Public Health Yearbook 2010 Joav Merrick (Editor) 2011. ISBN: 978-1-61209-971-2
HEALTH AND HUMAN DEVELOPMENT
SELF-MANAGEMENT AND THE HEALTH CARE CONSUMER
PETER WILLIAM HARVEY
Nova Science Publishers, Inc. New York
Copyright © 2011 by Nova Science Publishers, Inc. All rights reserved. No part of this book may be reproduced, stored in a retrieval system or transmitted in any form or by any means: electronic, electrostatic, magnetic, tape, mechanical photocopying, recording or otherwise without the written permission of the Publisher. For permission to use material from this book please contact us: Telephone 631-231-7269; Fax 631-231-8175 Web Site: http://www.novapublishers.com
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Library of Congress Cataloging-in-Publication Data Self-management and the health care consumer / [edited by] Peter William Harvey. p. ; cm. -- (Health and human development series) Includes bibliographical references and index. ISBN 978-1-61122-214-2 (eBook) 1. Health services administration--Australia. 2. Medical care--Australia. 3. Self-care, Health--Australia. 4. Health care reform--Australia. I. Harvey, Peter William. II. Series: Health and human development series. [DNLM: 1. Self Care--utilization--Australia. 2. Health Care Reform--Australia. WB 327] RA971.S393 2010 362.10994--dc22 2010034042
Published by Nova Science Publishers, Inc. New York
CONTENTS Preface
xi
Introduction
1
Chapter 1
Coordinating Healthcare in Australia
5
Chapter 2
Acute and Chronic Care Approaches
29
Chapter 3
Beyond the Acute Care Paradigm
33
Chapter 4
Economic and Social Benefits of Self-management
37
Chapter 5
Compression of Morbidity: Living a Healthier and Longer Life
51
Chapter 6
The Self-management Rationale
59
Chapter 7
The Ethics of Self-management
63
Chapter 8
Self-management: An Ideological Perspective
69
Chapter 9
The Paradox of Self-management
73
Chapter 10
Population Health
83
Chapter 11
A Curriculum Framework for Learning about Self-management
99
Chapter 12
Environmental Health and the Self-management Dilemma
107
Chapter 13
Empowerment and the Health Care Consumer
111
Chapter 14
Gambling Addiction as an Emerging Context for Self-management
115
Chapter 15
Early Intervention Training and Peer Education
123
Chapter 16
The Health Care Industry Revisited: A Glimpse of the Future
129
Chapter 17
Consumer Stories
137
Chapter 18
Health Aphorisms
139
Chapter 19
Conclusion
141
References
145
x About the Author
159
About Flinders University
161
About the Book Series “Health and Human Development”
163
Index
165
PREFACE This book is especially apt for those interested in implementing the practices and strategies that support programmes of health maintenance, preventive health and strategies for bringing about a change in personal and population health outcomes. These initiatives are sorely needed in all sectors of health care and prevention. Indeed, numerous reviews of health systems world-wide have highlighted the centrality of personal behaviours and self management as a key to improving the outcomes for the individual and populations. The notion that the client or patient should take primary control of their personal health initiatives as a central plank of health reform has been generally accepted. However, the role of health care providers, funders and health system administrators in fostering this “selfmanagement” approach has been influenced by attitudes and practices of the stakeholders whose professional practice has often led them to assume a “command and control” approach to service provision, where doctor or regional health bureaucrat knows what is best. The authors of the chapters in this volume have all been central to the health reforms that are occurring in the Australian context. Each has demonstrated in their particular areas how that bridge can be forged from central policy to personal health responsibility and selfmanagement. I commend this book as critically important know-how about the practicalities of implementing self-management as a key component of health reform. Peter McDonald AM Emeritus Professor, Flinders University
INTRODUCTION This work has grown out of a generation of research into the identification, prevention, management and self-management of chronic and complex health conditions in Australia and around the world. As western societies became more affluent, more hurried and stressed and at the same time more effective with their science of treating and managing infectious diseases, major changes are occurring in our illness patterns and across our lifestyle profiles. Firstly, modern science is managing major infectious diseases more effectively than ever, which means that in many developed countries the focus of illness treatment is shifting from dangerous infectious diseases (TB, viral infections) [1] to treating and managing chronic illness. Chronic or longterm illnesses such as diabetes and cardiovascular disease are now dominating the disease profile of western developed countries and are responsible for around 70% of illness, health care costs and deaths. Therefore, whereas a hundred years ago most of the activity in the health industry was related to treating trauma and infection, today we are facing a crisis in the management of chronic disease as the previous health problems decline relatively against a geometric increase in chronic and complex health problems. The good news, however, is that a large proportion of the current and emerging chronic illness epidemic can be prevented or, if not prevented, managed effectively to allow people to live relatively normal lives even though they may be living with complex chronic health conditions. But what has led to such an increase in chronic illness? Has the human body reached the limits of its biological and evolutionary design? As we live longer are we falling victim to a range of diseases that, in the past, we had not lived long enough to contract or are we doing things to our bodies today that are causing us to be less healthy and less robust at both the individual and population level? Are our lifestyle choices, the way we live, work and relax affecting our longer-term holistic health adversely? Surely with the threat of infectious disease being managed and controlled through the advances of science and break through technologies like antibiotics and gene techniques, humans should be able to live longer, healthier and less troubled lives [2, 3]. Rather than this being the case, however, we are now facing the very real prospect of future generations, for the first time in our history, living shorter and less healthy lives than their forebears. That is, as a population, we are falling victim to mental and physical illnesses that have not occurred in society at such levels before. Conditions such as depression, mental illness, metabolic
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Peter William Harvey
7syndrome, diabetes, heart disease, addictions and cancer are becoming more and more prevalent in not only elderly people, but in younger populations as well, and at an earlier age. The way we live today; our increasingly sedentary lifestyles and excessive consumption of modern foods, for example, is making us sick at an unprecedented rate and this aggregation of sickness is not only limiting the potential of individuals to enjoy their life over a natural lifespan relatively free of disability and illness, but is impacting adversely upon the entire social and economic fabric of modern society. With the cost to the community of health care in Australia now almost 10% of GDP (in the US it is over 15%) and with this level of illness impacting on our production and overall economic output, our health is something that can no longer be taken for granted. So how, with this shift from acute illness care as the focus of our health system to chronic illness management, are we firstly to reduce the impact of such illness and secondly learn to prevent illness in the first instance? Is it a system problem that is best solved in hospitals and by health professionals or is the problem far more fundamental than this? Is the problem really to do with what forms the mind-sets of individuals; mind-sets that formulate and create the lifestyles that are determining our overall health and crippling and killing us as surely as if we had contracted TB or blood poisoning from a physical injury? We are not clear-sighted enough to see with such wisdom at present. What we do see though is an ever increasing pool of people contracting lifestyle related illnesses that prevent them from living a fulfilling and happy life and which then cost our economies significantly into the bargain. Perhaps the wealth generated from fast foods and other aspects of our modern lives will create sufficient profits to cure or help to manage our resultant chronic conditions… the tobacco tax will pay to treat and manage all of the illness caused by tobacco consumption the wine tax will compensate for all the illness due to excess alcohol consumption in society the fuel tax, registration and insurance industries will pay for all the illness and trauma caused by the motor vehicle and oil industry History tells us, however, that this is unlikely to be the case. Rather the profits from such enterprises will not pay to fix the damage they cause any more than the profits from the oil industry adequately compensate for the damage that this industry inflicts upon our environment, our society and upon individuals over time. In this case then, might it not be better to encourage lifestyles that produce better health outcomes rather than poorer? Would we not save significant sums of money as a society if we were to create more low profit food industries with less deleterious impacts upon the environment [4] and the lives of consumers than is the case for the current crop of high profit, high impact and low efficiency industries that feed us today? Might it just be better to live and eat and drink in ways that we know engender better health rather than continuing the current trend of over consumption, waste and artificiality in our lives that we know cause problems for our health? We know that the profits derived from modern production methods can never pay the full price of their downstream impact and cost on society so why not reduce the profit take, obviate the necessity for spending more and
Introduction
3
more on curing preventable illness and instead concentrate on building a better, more balanced and natural lifestyle that is productive, overall, of better health and is more sustainable from an environmental perspective as well [5]. Perhaps this plea for education in the broader concept of self-management for improved lifestyle choices and health outcomes is tantamount in today‟s context to similar situations in the past where people attempted to reduce or eliminate warfare as a means of improving human quality of life. It may be that the current plague of chronic illness is a natural selection process at work preparing the survivors and their offspring for the brave new world ahead and that like war in the past, we are powerless to prevent it, even though its prevention would imply massive health benefits for the individuals and communities involved in it. At the same time, it is worth acknowledging that if it had not been for the devastation of warfare in the past, we might not have developed penicillin; a product which has saved millions of lives since. Perhaps, like the war and the invention of penicillin, we need some generations afflicted with complex chronic conditions in order for us, as a population, to transcend its effects in future generations; out of adversity grows strength and the quality of life evolves [6]. Awareness about chronic illness self-management is growing in the public health arena and health care providers are beginning to train their practitioners in new ways of working with and managing chronic disease. This is well and good, but in addition to the fine work going on in the health sector, there is a need to translate emerging practices, knowledge and skills into the wider community. This book attempts to take these emerging approaches and move them into practical applications for lifestyle choices that will help inform people and improve their prospect of avoiding early onset chronic disease and help them manage their lives for health rather than manage their sickness. By extending the rationale for chronic illness management to an approach to lifestyle and living that helps to prevent early onset of illness we can take the next step in improving not only the health status of those with illness, but help others to avoid such problems. In addition, the self-management motif is a metaphor for individual control and empowerment; it invites us all to take more control over the factors that influence our health, to take more responsibility for our lives and to live healthier and freer lives rather than being enslaved by the health care industry. The key principles of chronic disease self-management, a management strategy for those who already have chronic and complex conditions, are not in themselves complex. In order to live a better life with chronic disease a person would need to… improved their overall knowledge of their condition follow a structured treatment plan agreed with the health provider actively share in decision making about their health care monitor and manage signs and symptoms of their condition manage the impact of their condition on the physical, emotional and social aspects of their lives 6. adopt behaviour that promotes healthy lifestyles [7, 8]
1. 2. 3. 4. 5.
Further to this model of care, however, is the need to manage the antecedents of chronic illness; that is to learn to manage lifestyle, exercise, diet, work and leisure time to minimise the potential for developing chronic illness in the first place.
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Peter William Harvey
The latter task is the focus of this book; an attempt to apply the self-management principles used in current health care approaches to preventative lifestyle strategies that can help people avoid the onset of disease in the first place. The real task, in addition to assisting those with chronic illness, is to empower people to live lives that free them from dependence on systems that cost us all too much.
Chapter 1
COORDINATING HEALTHCARE IN AUSTRALIA The vision for coordinated care articulated in the first round of the Australian Coordinated Care Trials [9] was for the trials to establish an outcome-based health care system in which health care organisations would pool funds from existing and diverse sources to implement early intervention and preventive programmes in communities. This was a strategy for reducing the incidence of and demand for crisis care and improving health outcomes for whole populations; geographical populations (eg rural regions) and illness populations (eg diabetes sufferers). The rider to this vision is that much in the health care industry has to change to bring health management out of the „cottage industry‟ mode to embrace the wider, mechanised and IT-driven world of integrated data and team oriented, collaborative service delivery and organisational management. Already it is becoming difficult for practitioners to keep track of ideas, best practice protocols, the latest drug treatments and the impact of research in social health and so on. Unless hospitals, community health organisations, GP surgeries and private provider organisations begin to collaborate around the delivery of more effective and proven health care programmes, there will not be enough money in the system to maintain current levels of care, to say nothing of funding the evolving systems that we clearly now need. GPs in rural settings, for example, will need to work longer and longer hours seeing more and more patients over shorter and shorter periods of time in order to maintain their current levels of income. This will necessarily mean that the quality of input will decline and possibly health outcomes as well unless alternative modes of delivery are established. One way of making our system more responsive to need and more efficient is to invest in effective management systems that integrate and link patients to proven service systems based on reliable and up-to-date information about service needs and service availability. The „SA HealthPlus‟ project in South Australia showed that the coordination of services at the patient level is a powerful process for improving health outcomes and supporting patients to take the initiative in managing their condition. Part of this coordination process not actually tested through the coordinated care trial was the use of appropriate technology such as call centres, GP and pharmacy networking tools and electronic recording and reporting systems. There are suggestions, however, that we should pursue the technological assumption that vast investments in technology will be cost-effective with caution.
6
Peter William Harvey “We should take seriously a plausible assumption that, until specifically proven otherwise, almost all future technological innovations will add to the aggregate cost of health care. This has been the history of most innovations so far, and it is a reasonable assumption about those in the future; there have been no notable counter cases in sufficient quantity of late to undercut that assumption.” [10].
Implicit in this vision is the social health view that much illness is preventable and indeed directly caused by the social and psychosocial aspects of our lives [11, p233] and that broad socially oriented support systems need to be put in place to create and maintain healthy life styles. Health and well being is a social construct and as such goes well beyond the boundaries trodden by our current health care systems. It implies the need for our view of health to embrace the concept of „wellbeing‟ in a new way and to acknowledge that much of what passes for illness today is linked to the way people‟s lives are affected by destructive social forces. These forces are a direct result of our current model of social organisation that tends to hold individuals responsible for their own state of existence irrespective of the levels of advantage or disadvantage impacting directly upon their lives. The new vision for health care then is not about treating illness alone, but is as much about social re-construction, social support, social capital, employment, education and information systems as it is about clinical and medical intervention [12, p343], drugs and surgery. Some even suggest that such approaches to public policy are attempts to avoid collective responsibility for social well being and force individuals to accept disproportionate blame for their condition, but for Putnam, social capital… “…is not a substitute for effective public policy but rather a prerequisite for it and, in part, a consequence of it. Social capital works through and with states and markets, not in place of them. The social capital approach is neither an argument for cultural determinism nor an excuse to blame the victim. Wise policy can encourage social capital formation, and social capital itself enhances the effectiveness of government action [13, p42].
So what has the coordinated care trial process actually changed? What management and organisational structures were influenced to enable this evolutionary vision to be realised? The implicit agenda of coordinated care in Australia is that social intervention in the community can improve health outcomes. That is, whilst the coordinated care trials have focussed on clinical and psychosocial aspects of care at the patient level and attempted to introduce new organisational and integration processes, most of the achievements of the trial have been produced through social interaction and support. Many of the components seen initially to be integral to coordination were not actually delivered during the trial intervention (IT networking, GPs working in the broader care coordinator role, properly integrated services and all necessary services in terms of best practice). What has been delivered though is a thorough service coordination programme central to which is the personal interaction with and support of service coordinators for patients. This process empowers patients to manage their condition more confidently. However, evidence suggests that certain groups of patients achieve improvements through this behaviour change approach [14]. Other patients are in need of much more significant system level and community level support to make improvements in their condition. Baum suggests that,
Coordinating Healthcare in Australia
7
“The recognition that health promotion strategies centred on behavioural change have limited effectiveness has led to the search of alternative ways to promote health. (The) notion of socio-environmental health promotion does not reject medical or behavioural strategies but sees their role as limited and complementary to broader social, environmental and economic strategies.” [11, p320].
This wider view of the change process notwithstanding, however, the social support structures and care protocols managed by GPs and service coordinators achieved a significant improvement in health outcomes for patients with chronic illness [15]. The wider implication of this outcome is that appropriate social interventions can actually replace much of what currently passes for medically based best practice health care provision. This means that GPs, for example, need not necessarily treat patients with chronic conditions as they have done in the past, but rather devolve responsibility for much of their care to others who have more time and who are better placed in terms of their connectedness to patients to explore the „whole of health context‟ around patient ill health and potential well being. Pharmacists may not need to dispense so many prescriptions for medication if patients are managed in alternative ways and hospitals [15] may not need to admit people so frequently as a result of emergencies and crisis events. Further, if patients are admitted to hospital, the better management of their discharge after treatment can avert subsequent admissions that occur currently as a result of inadequate management on discharge. In addition, better management and coordination processes might advance the social well being agenda, give credence to the social antecedents of ill health and enable fundamental action to be taken to improve our systems of health care. The coordination process provides outcome data around treatment and management regimens to support and sustain arguments for early intervention and prevention funding. This view of health and well being is synonymous with education and social support and, for the main part, de-mystifies the current delivery mode, re-constructs it in human and social terms and recognised the fundamentals essential to creating improved community health and well being generally [16, p14]. The trial demonstrated, therefore, that GPs can be funded in different ways, other than the fee for service system, to achieve health outcomes [11, p47]. Under an outcome model such as SA HealthPlus, their income could be guaranteed as care coordinators managing overall patient health and much of the routine work currently being done with patients could be managed differently through other health professionals such as the SA HealthPlus service coordinators and allied health staff. Such systems have been demonstrated through the Coordinated Care Trial and through early Division of GP team projects in diabetes management, and promise to overcome many of the shortfalls and barriers of the fee for service system. “These barriers have been identified as the fee-for-service structure, short consultation times, the traditional focus of medicine on curative interventions and general practitioners‟ lack of health promotion skills and knowledge” [11, p293].
The coordinated care trial, therefore, not only demonstrated a new model of care, but contributed to the change dynamics necessary to enable alternative funding and delivery arrangements for primary health care to be implemented directly by the Commonwealth Government. The Commonwealth subsequently introduced new item numbers for health
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Peter William Harvey
assessments and care planning and also fund pharmacist to carry out medication reviews for patients with complex medication needs. Coordinated care has therefore been an effective change management strategy for moving service delivery systems and community perception of health care towards a more patient centred and socially focused model of care and has also provided an avenue for GPs to work differently in support of their patients. Essentially, coordinated care provided the stimulus to change the regional approach to health care, empower patients in determining their care and recognised the central importance of the social determinants of well being [17]. It also demonstrated elements of a model, through the implementation of the trial, which could be adopted by the ERHS to advance a broad, multi-disciplinary and collaborative approach to the provision of community health care. In Caldwell‟s terms, SA HealthPlus has created leverage points for change across the regional health system and contributed to the development of a more responsive and effective health care system. “Leverage points are those vital few elements of the system that have a disproportionately large influence on the system‟s performance and direction. When one needs to change the direction of a large boat, the rudder position is altered. Often, these factors are overlooked because they may not be main stream. They may have to do with environmental factors that are subtle. The results of working on the leverage points may not be dramatic, but are robust in sustaining the change process. [18, p116].
At the same time, however, there are other facets of the change process to be considered. “Resistance to change is understandable in European countries where the experience of employees, professionals and managers is that the politicians are using change programmes, restructuring and the re-configuration of public services to cut costs and undermine the trade unions. This has created a lack of trust in those efforts to transform organisations and public bodies in the interests of the public, users and quality. This is a problem for those seeking to transform or democratise the services in the interests of users.” [19, p235].
In the rural context, for example, the main drivers or leverage points were the need for change within the Regional Health Service, a shortage of GPs and health professionals, pressure on the hospital units to meet funding targets along with the emerging role of community health service in advocating for GPs to develop more integrated practices. Beneath this debate is the belief that much of what passes for acceptable GP practice is clinically or „end point‟ oriented and that more preventive and collaborative approaches to community well being could achieve improved health outcomes at reduced cost. SA HealthPlus provided the avenue through which such options can be explored. This contribution to the change agenda in the Region Health Service is arguably the most important outcome and one which set the context for further developments beyond the structures of the initial trial period.
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CHANGE AND THE TRIAL PROCESS The trial began, ostensibly around egalitarian principles, which paradoxically evolved from the veiled profit motives of US managed care organisations and evidence based approaches to social health and well being. Its agenda was about good personnel management principles, effective group processes and system-wide or transformational change within the health system. “The SA HealthPlus trial had a transformational change agenda, with a number of design implications. It assumed a fundamental restructure of health funding at the Commonwealth/State level. It would impact on the health sector and evolve in line with changes in the field, the trial would deal with issues in a change rather than „experiment‟ context, particularly power/ownership issues, and would develop systems that could be scaled up to accommodate expansion. [20, p5].
However, the final structure of the trial group (centrally at least) negates all of these elements suggesting that the loss of the transformational vision for the group led to a more traditional, bureaucratic style of management across the system. Bass describes this as a shift from transformational leadership to transactional leadership [21, p588]. This difference between transformational leadership and transactional leadership is outlined in his earlier work. „The transactional leader may bargain about what exchanges will be provided for services rendered; the transformational leader may provide persuasive symbols and images about what a renewed organisation would look like…the transformational leader may search for a participative consensus for reconstructing the organisation.‟ [22, p29].
SA HealthPlus, although espousing the need for good change dynamics within the group was not able to invest sufficient time to ensure the development of a shared and common vision. This weakness in the internal SA HealthPlus processes allowed the DHS to overtake the almost rebel agenda of SA HealthPlus and move the whole project back under the central bureaucracy with established government processes restricting the change agenda of the trial. This was such a major change to the original coordinated care agenda that SA HealthPlus and coordinated care began to be seen in early 1999 as nothing more than a sub-unit of community health structures. A major change opportunity was therefore lost to SA HealthPlus centrally, and as managers began working more and more like public service bureaucrats, the potential for independent cash pooling, outcome funding and for overturning the waste and duplication in the public health system was curtailed. The resistance within the system to change initiatives such as SA HealthPlus is not to be underestimated [19, p235]. Although the SA HealthPlus trial resulted in some significant structural changes and a successful demonstration of alternative ways of organising and running health care for patients with chronic illness, the changes achieved have been within the existing structure in the main. No fundamentally new solutions have emerged, within the trial framework at least, and this is predominantly because the agenda for change was moved back inside the existing health system in 1998, significantly reducing the opportunity for wider market forces to impact on policy and direction.
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Perhaps the original market-driven agenda was too ambitious for the State and perhaps the current balance within the public sector provides a more manageable albeit conservative approach to change. In any event, the restructuring of the Department of Human Services (DHS) soon saw elements of reform curtailed, allowing the bureaucratic ranks to close behind the void left by their departure. It would be a long time before the public sector would allow such vulnerability and exposure to exploitation by its own rank and file again. Had the original charismatic and transformational agenda for SA HealthPlus been shared more widely and earlier in the evolution of the trial, staff may not have lost their focus allowing them to be lulled back in to the DHS mentality. The instigators of the SA HealthPlus concept, it should be remembered, established a quasi-non-government approach through which the trial would be managed. Secrecy, intrigue and mysticism around these moves were part of the transformational agenda. Clearly, the real intentions of the organisation could not be shared with all managers and players within the programme because Government funds, both Commonwealth and State, were being used to establish the model of care from which private or quasi-private organisations might ultimately benefit. The change leadership status of the original SA HealthPlus group was so precarious that people did not know from week to week whether funding would be secured to enable its continuation. Trial agreements with the Commonwealth Government were held up for over six months while SA HealthPlus hammered out the intellectual property rights issue to ensure that the Commonwealth did not retain all rights to intellectual property developed through the trial. This was done, presumably, because the state wanted, ultimately, to own and be able to discharge responsibility for the mechanisms and systems of management evolved through the SA HealthPlus project. The initiators of the trial were in effect traitors to the public sector that employed them. Frustrated by the lethargy of the public health sector and its apparent inability to address the need for change, these paragons were seduced by the potential to make health much more efficient within its existing resource base. In doing so, no doubt, they thought that some of the new-world efficiencies of private management would end up as resources to be re-invested for improved health care. This was the sticking point with the public sector! The public sector feared being led into a private structure for health with all the implications for ideology, staff career options and departmental power. Senior bureaucrats also resented the fact that some of their team-mates had used their public office to structure semi-private arrangements in the trial for employment of staff, consultant contracts and for shifting the public fund pool into the wider market.
REGIONAL LEADERSHIP FACTORS Significant changes to the motivation and enthusiasm of the Regional General Manager (RGM) for health made progress more likely as the trial developed. Initially, the RGM and the Board of management were sceptical about the trial and its potential impact upon the change process for developing the Regional model of care. Indeed, most people viewed the trial in its declared pose and were unaware of the potential for the trial to drive change across the health service. Some managers and health unit leaders were even amused that such a concept had been initiated. What was the point of such a venture?
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A change of heart by the RGM made the possibility of building upon the trial quite real. As Bass observes [22, p53], the motivation and enthusiasm of the CEO of an organisation for change and new models of organisation is one of the most significant factors in the change process. The realisation by the RGM that the momentum and energy created by the charismatic leader of SA HealthPlus could actually be put to advantage across the Region to develop a new model of care was a turning point in the function of the trial. This change occurred in the early months of 1999 as the trial research and project objectives were achieved and short-term gains appeared to have been made for intervention patients compared to the cost of services for the control group patients. By picking up the idealism and enthusiasm of leader of SA HealthPlus, the RGM gave real impetus to the potential development of a new health care system and saw a role for the Coordinated Care model in building a more effective Regional Health Service. Financial imperatives were also impacting upon day to day service delivery and the Region could no longer escape the realisation that it needed a new funding and delivery model if it was to survive as an organisation. All these factors combined to engender new enthusiasm for the possibility of change within the Regional Health Service and, at least in part, the SA HealthPlus trial was involved in realising that solution. As Bass recognises, this leadership enthusiasm is characteristic of successful change initiatives generally. The RGM appeared to have picked up the enthusiasm of the SA HealthPlus team and the agenda for change and become aware of the potential for the SA HealthPlus vision for change to be instrumental in the development of a new regional health system. This was particularly the case following his trip to the US to examine managed care organisations there. He had come to share the vision that it was now possible to incorporate local control, pool resources and shift the emphasis from the acute to the primary care sector. In effect, he had realised that major change was necessary if the health service structure was to function at all and that it was no longer sufficient to keep doing „more of the same‟, but that major reorganisation was necessary. The health service Chairman was also of this opinion at this stage and encouraged change within the health unit management team. He began Regional planning, which led health unit managers down the path to significant change. At a weekend regional planning meeting (December 1998), the RGM suggested that if new models could not be found to manage health resources more effectively, the regional system, as it was, would fail. This meant that health units would have to return to running their own local affairs without the benefit of an overall regional resource plan.
PRIMARY HEALTH AND COORDINATED CARE The Eyre Region has been attempting for some time to argue for a more robust primary health system in which early intervention and prevention of illness, as detailed in the Ottawa Charter, is fundamental to the management of community health. However, community health, one of the main public vehicles for providing primary health care intervention, has been funded traditionally through a historical grant process as part of the hospital finance package. Its funding is fixed and determined by the acute sector as much as it is by the real
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primary health needs of patients. In spite of numerous reports and studies into the need for more primary health intervention, progress has been slow. Much of the debate around the primary health agenda has hinged on whether primary intervention, as practiced in community health centres, really works and whether the funds used in that system would be better deployed within the acute sector. Historical battles for turf between GPs and community health workers have resulted in sluggish relationships between the two groups and certainly the tenets of the Ottawa Charter seem not to have been advanced significantly for all of the debate and discussion about what constitutes real primary care. Into this context, SA HealthPlus provided a new strategy to support integrated primary care. It brought the GP and the service provider together to coordinate essential services and offered a sustainable argument for shifting some acute resources into the primary sector to expand primary health intervention. The ideology of primary health care has its history in revolutionary socialism and the recognition, along with economic determinism, that the social and economic conditions of people‟s lives determine the degree of well being they might enjoy [23, p91]. In this context, health care is conceived in terms of well being and prevention and not only as a process of caring for the sick. The view of health depicts capitalism at the root of ill-health in society with the profit motive actually creating illness as a product of capitalist production [11, p11]. Take away the class struggle and the capitalist profit motive and societies would focus more on the total well being of communities rather than dividing the culture into wealthy and well as opposed to poor and unwell. As Marx suggests, “The ideas of the ruling class are in every epoch the ruling ideas” [24, p64], and in modern times the ruling ideology is still manipulating economic capital for the benefit of the empowered at the expense of the disempowered. For modern society, we need, however to speak of the power relations in terms of access to employment as well as in terms of deprivation and abuse of working people within employment. Whatever one‟s political persuasion, it is clear that good health, good food and healthy lifestyle are factors that correlate more with wealth than lack of wealth in society and wealth is not distributed equitably across society. “People with low family incomes report poorer health than people with high family income (National Health Strategy, 1992). Low income is associated with more risk factors. Men and women in low income families are more likely to smoke and be inactive, although they do have a lower alcohol risk. Children in low income families are 45% more likely not to be breastfed. Data from 1985-87 show that being poor has most effect on younger people. The association of socio-economic status with mortality is observed for all causes of death, but appears to be stronger for some than others (pneumonia/influenza, lung cancer, diabetes, bronchitis, asthma, emphysema, and motor vehicle accidents.” [11, p190].
Although the Marxist view has its origins in the struggle for the ownership of the means of production and the relations between employer and employed, it is still relevant to modern society [25, p17]. Today, the lack of access to work is becoming a more important determinant of well being than the struggle for fair wages and good working conditions was during times of higher rates of employment. Unemployment is now a health hazard not only because of the poor labour relations and working conditions as in the past, but because of the
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economic deprivation it creates. Also, lack of access to work is an important health consideration because of the psychological factors associated with lack of opportunity for meaningful participation in society. Wood observes that, “One cause of alienation cited by Marx is the frustration or abortion of human potentialities by the capitalist division of labour. Another perhaps even more prominent and fundamental in Marx‟s accounts, is the way in which people under capitalism are placed in a condition of degrading servitude, not merely to other human beings, but even more basically to impersonal and inhuman forces of their own creation.” [26, p48].
Medical and scientific developments have tended to find individualised explanations for a lack of well being among people and, from time to time, move the emphasis for well being to a more personal level. For some time it has been acceptable to see illness in a microcosm in which the individual problem is managed through acute intervention. The holistic view of living and being, although currently out of favour because of the social implications attached to it and the cost to the community of accepting it, is omnipresent in this changing emphasis in the way society views its approach to community health. History shows fluctuations in the degree to which society and social theory have been enlightened about cause and effect in relation to illness and well being. Currently the social view of cause and effect is being overshadowed by the economic and individual view and some primary health purists are being frustrated by this trend.1 When discussing the issue of primary health with devotees of that school of thought, it is pertinent to reflect on Marx, ideology, social theory and the practical application of it. Marx argued for the need to synthesise these aspects of social theory and social action and provide strategies to realise theory in practice. He referred to this as „praxis‟; that careful dialectical mix of theory and practice that might yield strategies to change the way we look at and live in the world; change our dominant ideology and the practice that follows from this ideology. The primary health debate is currently caught in the kind of ideological cleft stick that Marx was attempting to resolve through his theory of dialectical materialism and economic determinism. He wanted to take socially and politically relevant and informed theory about power, position, work and social class and use this to create practical solutions that could modify or remove unjust and inappropriate social constructs such as economically determined social class along with the human and community implications of this. The community health debate is bound by a well articulated ideological framework that rightly sees illness in social and psychological terms and not only in medical terms. Much of what passes for illness, and is treated medically, does indeed have a social origin that could be avoided to some degree at least in the best of all worlds. In such a world, people would not suffer poverty-related illnesses, all children would learn to read and write, get jobs and live a fulfilled life with no anxiety or alienation and with no resultant neuroses. In such a world many of the deleterious effects of social living could be moderated and the incidence of chronic illness would be reduced. This is axiomatic within the Ottawa Charter [27]. Of course such a reality is as much an ideal today as it was for Marx when he visualised the opportunities he hoped would flow to all people as a result of the industrial revolution. He 1
That is, by the idea that the individual needs to accept responsibility for their economic and social being irrespective of the ideological frameworks in society working to create under-privileged communities and alienated individuals.
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saw that revolutionary socialism was destined to free working people from mundane toil and enable them to become educated, literate and fulfilled beings who would all share in the surplus capital generated by mechanisation and the overthrow of cottage industries and dark ages religiosity. Clearly, in spite of these advances, we have not yet become hunters in the morning, fishers in the evening and philosophers at night en masse and the economic and social capital being generated through productive processes is still controlled disproportionately across the community. The component missing in this debate as it translates to modern community health ideology, however, is the strategy to bring about the change required to realise the common vision of community care, early intervention and prevention. Having this view of the individual in terms of all the complex and competing elements in society that contribute to their general state of well being or illness is one thing, but to have a strategy for achieving structured change within such a view of reality is another. It is no longer sufficient to espouse ideological rhetoric around improving overall community health. What is needed is a strategy to realize some of the objectives that are commonly understood in the community health arena. For some time now this more ideologically based view of community health or primary health care has been popular within health services and has been seen as the antithesis of the current orthodoxy in primary care, which is GP led clinical care. The two components of our health care system form natural antitheses begging synthesis. The problem is that we have not had a strategy to complete the synthesis. Old hackneyed clichés about medical models versus primary care models are still common place, but this antagonism does not contribute to a resolution of current problems; it is unproductive and sterile, but worse it is idle rhetoric! The SA HealthPlus trial provided a strategy in the Eyre Region to achieve a shift in the primary care delivery system and promoted the primary health agenda significantly in spite of antagonism from various sectors of community health. Much argument proceeded along the lines that coordinated care was nothing new and that the community health care system was already doing this work. In addition, proponents of the coordinated care approach were seen as apologists for the so called medical model of care because of the central role within it of GPs as care coordinators and because patients were selected for the trial only if they had a chronic illness; that is, a medical condition. There was no attempt, so the argument still goes, to use SA HealthPlus to put in place a truly preventive, holistic model of care because it only concentrated on the end point of chronic illness. Even more troubling, there was the concern that the coordinated care trials were merely devised to reduce the costs associated with managing already confirmed cases of chronic illness. That is, there was nothing preventive or socially enlightened here! In fact, far from being an apologist for the medical orthodoxy, the SA HealthPlus coordinated care trial was a clear strategy to support GPs to become more extensively involved in the total care of their patients. The enrolment of patients with chronic illness was the initial step, over a two year period, to demonstrate that better coordination and integration of care would result in savings against hospitalisation, Medical Benefits Scheme (MBS) and Pharmaceutical Benefits Scheme (PBS) utilisation; savings that could be more effectively utilised within the primary care context. Once the trial had demonstrated this outcome, the next step was to enrol patients who were at risk of becoming chronically ill or patients with a high probability, due to their life style or living conditions, of developing such preventable conditions. This capability now exists in the form of the new item numbers for care planning
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that should result in the development of a sustainable, longer term, preventive health care programme in which some of the pressing social health agendas can be addressed. In addition, the SA HealthPlus trial introduced a model of care and care planning that began with a medical condition and translated it into social and emotional factors, personal goals and targets and a patient-centred programme of care. The GP, with the patient and the service coordinator put together an integrated plan that set out to empower patients and to assist them to expand the management of their care from a purely clinical context to a wider social and psychosocial context. The care plan was designed to address the whole range of patient needs from medical, clinical, emotional and social; the best attempt at implementing the Ottawa charter framework yet made. Further, not only did the coordinated care approach develop a process for empowering patients to take more control of their conditions in a preventive and holistic way, it also provided a mechanism for supporting GPs and other health professionals to move to a new model of outcome-based health care. In this model, ongoing funding was to be devolved to health systems for improved early intervention and prevention strategies, as is now the case with the new Commonwealth care planning item numbers for GPs. That is, the coordinated care approach actually provided an argument and a funding mechanism for the expansion of primary health services in the Region. Consistent with this approach, the SA HealthPlus management team argued for and secured significant additional funding for community health services during the life of the trial and this structure was subsequently extended and maintained on the basis of demonstrated health outcomes achieved. The trial demonstrated that certain primary care approaches would result in reductions in the need for acute services and MBS services. These „saved‟ funds normally spent on acute services, it was argued, could be used to continue and expand the primary health services available to patients, which would in turn reduce even further the demand for acute and medical intervention. In short, SA HealthPlus was the answer to the community health movement‟s prayers. The problem was that they had either forgotten what they were praying for or could not recognise the form in which their answer had been realised. In the process of establishing the coordinated care trial, SA HealthPlus also pioneered new ways of funding services for enrolled patients and instigated a closely tracked and monitored programme of care. This programme outlined what services were scheduled and when, and paid providers agreed fees for providing services. In this way, SA HealthPlus demonstrated the rudiments of an outcome funded health care system in which providers were funded to prevent illness and achieve certain best practice benchmarks in terms of health outcomes. The importance of this mechanism has perhaps been overlooked by community health services in their tendency to rage against the established order. Finally, the trial demonstrated that fund pooling could be used as a mechanism for combining a range of fragmented funding streams to create a defined funding source for specific groups of patients. This level of financial control and coordination, together with improved and more effective coordination at the patient and GP level resulted in improved outcomes for patients [14, 28]. These processes, in combination with improved system level coordination strategies such as improved IT and patient record management, all combined to create an environment of change that supported the expansion of preventative primary health care initiatives. In summary, the SA HealthPlus trial has provided a mechanism to move health services from their current grant and salary-based funding process to a new outcome funding process
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in preparation for the introduction of a more accountable and measurable funding process. SA HealthPlus provided a practical solution to a problem that has been looming for some time; how will community health acquire its funding to deliver all the primary health programmes it has for so long been saying it needs to provide? In the „new world‟ of health funding, organisations will need a rational argument for funding based on the outcomes that can actually be achieved with the money they spend. The Divisions of General Practice pioneered new ways of delivering and managing care and SA HealthPlus followed this lead. As long as the providers are able to achieve the desired health outcomes, their funding was secured to enable them to expand and diversify primary care delivery modes. Primary health now has a model with which to argue its case and this is a lot more than it has had in the past. The ideology alone was not sufficient to drive change. What was needed was a practical strategy for improving service efficiencies and patient health outcomes across the community. The interpretation of history alone won‟t change the dominant social orthodoxies of history to create a more just society, and the point surely is to change society for the better. To do this a clear strategy was needed. The SA HealthPlus experiment was part of that strategy!
THE IMPACT OF SERVICE COORDINATION ON THE CHANGE PROCESS By March 1998, 1350 patients had been enrolled in the intervention group and 500 in the geographical control group. Intervention proceeded from the initial enrolment process to include a „problem and goal‟ assessment and preparation of an individualised care plan. Service coordinators allocated to each patient facilitated this planning process in conjunction with the care coordinator; the patient‟s chosen GP. The care plan detailed routine clinical services needed by the patient and provided a framework within which patients could articulate their specific health problems and set achievable targets for themselves over a defined period of time. Patients also completed an SF36 assessment form and a work and social adjustment questionnaire that allowed them to rate the impact of their identified problems upon their life and work. They were then contacted regularly by their service coordinators who ensured that care plans were adhered to and that patients were supported in their efforts to meet their specified goals and targets. By September of the following year, after less than one year of intervention, patients were reporting that they felt much more in control of their condition and that they were more confident in their dealings with their GP (care coordinator). Utilisation rates and cost for the intervention group (MBS, PBS and hospital) were then tracked against the matched control group to determine any significant differences in health outcomes and expenditure. The control group, when scaled to match the intervention profile, was found to be hospitalised at a higher rate and to use MBS services at a higher rate when compared with the intervention group [14]. Clearly, the trial had major impacts on service delivery models while moving the regional health service towards systems change. The main intervention strategies were the care coordination and service coordination processes and the empowerment of patients through problems and goal assessment and care planning. Other planning intervention strategies such as IT linkages, fund pooling for service
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provision and purchasing of additional services did not take effect in the initial trial period. These initial trial outcomes suggest that social intervention and support for patients with chronic and complex illness reduces the incidence of health crisis leading to hospitalisation and visits to GPs since no significant increase in medical or clinical intervention occurred in the initial trial period. Initially it appeared that the potential to demonstrate effective outcomes as a result of better coordination and planning of services within a rural context was minimal. The rural sector was historically under funded for primary care services and hospitals were facing a funding crisis that meant rationalisation in the acute sector. Savings, even if demonstrated to result from better coordination of services, could not be shifted from an acute sector already under pressure of increased demand in a contracting financial environment. Those who would be involved appeared disinclined to spend time and effort changing the way services were delivered and funded. Generally, rural people were not all that interested in having their health care managed through such programmes and they preferred their independence and wished to be left to live their lives as they pleased. However, by December 1998, the rural component of the trial (Eyre RDU) had enrolled its target population, established a care model, gained support and active participation from most GPs across the region and established a service coordination process. In this time also, a full year of care coordination was completed for the initial cohort of 1350 intervention patients. The trial also set out to establish an integrated data network through which service utilisation, medical and pharmaceutical information and community health service provision would be linked to enable total coordination of services according to need. This was designed to reduce service duplication and ensure that best practice protocols were followed in caring for patients in the intervention group. Funds were to be pooled from State and Commonwealth sources to provide a funding source with which to purchase relevant services as defined by patient care plans. The SA HealthPlus central office developed a repository for patient data and to enable all providers, carers and coordinators to view care plans „on line‟ and make appropriate decisions about patient care. By the end of 1998, the only truly functional component of this initial framework was the care coordination and service coordination process. Service provision was principally the same as it was prior to patient enrolment in the trial although service coordinators ensured that patients made the most effective use of those services available. The only new factors in the patient care programme (discounting the Hawthorne effect) were the involvement of patients in a formal goal setting and care planning process and the extended involvement of the GP in this process as facilitated through regular contact with service coordinators. Care plans called for specified services and defined the number of times patients were to visit their GP. The GP care coordinator was funded, depending on the level of care of patients (High, Medium and Low) to coordinate patient care and oversee care planning. This payment was generally accepted by GPs to be in lieu of some fee-for-service payments. It may have contributed to reductions in the number of times that enrolled patients actually visiting their GP. In conjunction with scheduled GP visits, patients received ongoing contact, support and encouragement from their service coordinators who worked in teams based in major rural centres. The model was based on a team approach due to a need for collaborative and group support as the concept and model of care being developed was quite new and untried in rural
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settings. An additional benefit of the programme was that service coordinators have supported patients to make the best of the limited community health services in the Eyre Region. That is, in a very real sense, service coordinators, in addition to their defined role, became de facto service providers as a way of compensating for limited service availability in rural centres. Therefore, for the first year of the trial period the only intervention factors that could be considered drivers of reduced service utilisation in hospitals and the improved health outcomes reported by patients and problem and goal scores were the service coordination and care coordination processes. The question arises then, how is it that primarily social and organisational intervention from service coordinators can lead to improvements in health outcomes for patients with chronic illness? One suggestion might be that since the majority of patients are elderly, retired and living reasonably confined lives, the regular visits from service coordinators and the interest shown in patients through this process triggered a more positive approach to self management among trial patients. In addition, the timely intervention and support offered by service coordinators to plan and schedule necessary services was crucial to this outcome. The whole process of caring, supportive, planned and coordinated intervention through the agency of service coordinators has contributed to a noticeable improvement in patient participation in the maintenance of their well being [20]. The Eyre rural trial showed significant savings against hospitalisation and this saving, if it were capitalised upon, could provide much of the resource necessary to fund coordination for the trial group [29]. The introduction of other major elements such as the GP IT network, the advent of education programmes and the establishment of new purchasing arrangements for services, should mean that the Eyre component of the model of care could achieve even greater efficiencies in the longer term. This would enable the Region to provide an even more comprehensive primary health support programme for patients with chronic illness and to establish permanent resource allocations in the primary health sector. These tentative and early indications of a successful outcome of the coordinated care trial in regional South Australia suggest that significant outcomes can be achieved for patients as a result of well planned and coordinated service provision, but that this does not necessarily require more medical services. Quite the contrary! The more sobering implication is that consistent and caring social support and encouragement of patients to learn about and manage their own illness will lead to even better outcomes than are currently achieved through a more clinical and less holistic approach to illness management. As Daniel Callahan observes, this may lend support to the idea that improvements in health outcomes in the future will not be based on medical intervention or developments as much as upon social support structures and community initiatives that lead to better life outcomes for communities generally [10, p105]. These early findings are significant for rural South Australia. In a community where informal networks exist, but where traditional extended family structures are breaking down, people feel more confident and positive about their health if they have the reassurance of regular human contact and support. It is clear from those involved in the trial, and from regular service coordinator reports, that many patients with chronic conditions are living in less than satisfactory social situations and as a result of these conditions may tend to neglect their health. When the basic human networks fail, patients suffer a loss of direction and motivation, allow their health to deteriorate and ultimately rely on medical intervention to help them once their potentially manageable condition progresses beyond their control. Evidence in the literature suggests that people who feel secure, comfortable and happy with
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their lives are much more likely to live healthier and longer lives than those who do not have these supportive environments. The SA HealthPlus service coordinators appear to have compensated for a lack of social support for patients with chronic illness by giving people back their dignity and their will to help themselves rather than them relying on external intervention once essentially preventable crises have occurred.
HEROIC LEADERSHIP AND DISCONTINUOUS CHANGE The SA HealthPlus agenda for change was managed in a whirlwind of talent, vision and political urgency. It was based mainly on the work of a few visionaries or utilitarians who believed that changes had to be made in the health system and that there was little time in which to achieve the required changes. These changes in the model of care deployed within South Australian Health were seen as essential if standards of service were to be maintained. Increased demands upon the health system and a finite budget with which to meet these demands meant that a new set of priorities for managing and delivering health care were urgently needed. The vision for overcoming the crisis in health service provision was a shift to outcome funded health care in which services would be purchased to achieve defined health outcomes and essentially to prevent extensive recourse to acute intervention. Initially, SA HealthPlus was conceived as the main instrument in a programme of „transformational change‟ within the South Australia Health system. The concept of „transformational change‟ was indicative of the desire to achieve a reconstruction of the health system, not just minor alterations to it. The essence of the revolutionary change was to create a shift to an outcome-funded health care system, a market led system in which early intervention and prevention would work to achieve efficiencies and improved patient outcomes. It was also essentially pro-active rather than reactive or „crisis led‟, and provided funding for interventions that achieved defined health benchmarks or health outcomes. This vision, built loosely around such well established principles as those espoused within the Ottawa Charter and the primary health care movement, anticipated the timely investment in preventive health care and broad health education as a mechanism to reduce the occurrence of unnecessary hospitalisation and health crises. That it is more important and effective to use resources to build constructive, collaborative and supportive environments which are conducive to good health than it is to concentrate on the „illness end‟ of the cycle and treat people once they are unwell. From the point of view of social justice and equity, this kind of model is also more likely to distribute health outcomes more equitably across all cultures and social groups. A logical extension of such a system is the involvement of diverse providers in the health industry, all working within an agreed set of protocols which define best practice or best care for specific categories of illness. The implication of this shift to outcome focused health care was that the public health system could yield the savings to fund the timely early intervention programmes that were to prevent the need for expensive acute care and reduce duplication currently resulting from poor service coordination. The central thesis of the SA HealthPlus trial was that savings created within the acute sector by better coordinated GP-led primary care would be sufficient to fund the coordinated care process and additional, essential primary care interventions required to keep people out
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of hospital. The mechanism for shifting such savings from the acute sector was, of course, another much more complex matter. However, this obstacle notwithstanding, it was the principal purpose of SA HealthPlus to demonstrate that savings could be made for patients with defined illnesses and that once quantified, these savings would approximate the cost of delivering best practice-based preventive care to enrolled patients. Further, the vision with respect to transformational change was that, should this process prove to be effective and efficient, the wider health system might adopt the coordination process (with its „best practice‟ care and electronically linked providers attending to individual patient care plans) for other groups. The potential to apply this model to total populations and provide access to the SA health system to other health management groups was seen as a positive way of driving change and making the system more accountable and economically viable. That is, exposure of the health system to accountability and outcomes, market forces and the rigours of economic rationalism could lead to further efficiencies and improved health outcomes for the community. The issue of whether the SA health system could really be taken out of the public sector arena and function in a purely economic mode rather than in a social service mode was never really examined within SA HealthPlus at its inception. The involvement of US based managed care organisations in the establishment of the SA HealthPlus programme supported the notion that „managed care like‟ organisations were seeking profits in the rather lethargic public sector run health systems of Australia. At the time, the predominant financial ideology was one of rationalism that claimed that public instrumentalities must be viewed according to a standard business model. All services should achieve outcomes within a viable cost structure and the public sector should be held much more accountable for achieving such outcomes within funding limits. However, health, like education, being a human service system could not always count on getting efficient outcomes for standard input. There was the question of the unequal inputs required across the system in order to achieve equitable outcomes and the social justice arguments of the new public health lobby that suggested that the health benefits of our system were unevenly distributed to the economically and socially well placed populations. The change initiative was always ambivalent about the business model upon which human services should be predicated, principally because such a tight, economic model would always favour those with access to more resources [11, p430]. „Poorer people are highly likely to receive better health care in a predominantly public system than in a residual public system that is seen only as a safety net.‟…and, „Perhaps more than any other issue health inequalities highlight the intimate and inescapable link between health status and social and economic arrangements. Questions of wealth distribution, strategies to reduce poverty and unemployment and improve living conditions for the poorest members of society are concerns that should be central to public health agendas for the twenty first century.‟ [11, p435].
Further, the spectre of „managed care‟ and outside financial interests following on the heels of the SA HealthPlus trial may have acted as a catalyst for the contraction of the coordinated care process. This fear of outside business domination, the New Zealand experience in particular, may have led to a shifting of the change agenda from the utopian transformational change position to the more practical incremental change position, which followed the restructuring of the DHS. In 1998, the departments of Health, Housing and
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Family and Youth Services were amalgamated into the larger DHS structure. Simply, the wider transformational agenda was perceived to have far too much reliance upon fund management for profit for it to be palatable within a hitherto predominantly public health ethos. The possibility that outside capital would be needed to fuel change created fear that any efficiencies or savings made ultimately would be taken out of the State in profits and dividends for investors. The utopian agenda became much more realistic in such a light and the change agenda much less ambitious. In many ways, the agenda for change within the SAHC led the SA HealthPlus coordinated care trial operated on a very old, traditional platform. This platform offered leadership by inspired, enlightened seers who, by virtue of their experience and proximity to current orthodoxy, were able to motivate people, appeal to their emotions and their hearts and lead a new era of organisational orthodoxy. The formula is a tried and true blend of a desperate economic imperative driving a need, timely political opportunism and pseudomystical incantations, conjuring and even deception all combining to lure the conservative and safe thinkers and bureaucrats out of the security of established practices. Argyris refers to this phenomenon within change management as the „champion approach‟ to change in which inspired leaders take on the task of winning the hearts of their followers and urging people to share in the vision for change [30, p102]. Others prefer to view leaders of such a model of change as „heroic‟ or messianic in the sense that their mission is inspired by a dreadful imperative and a belief that no other solution will serve to take society beyond its current impasse. Usually this takes the form of a threat of doom or destruction, driven by an almost trans-human irrationality or belief in simple principles. The pursuit of such principles allows the organisation to transcend the hitherto complex conditions of reality and established processes by transforming and reconstructing these complexities into a simpler analysis with simpler solutions. This approach, in the case of SA HealthPlus, was supported by a group of devoted followers who had rejected the current orthodoxy for a new vision of the „Promised Land‟ or the utopian dream of revolutionary change. This band of committed believers (all constructing their own realities within the broad framework) then set about constructing the illusion of change. If this were continued for long enough it would ensure that change occurred not only in the minds of the change agents, but in reality, that is, in the day to day operations of the organisation involved. In such times of change, there are those who would benefit from the switch to a new orthodoxy and use the opportunity to build new empires. The degree to which vested interests drive the new system for personal benefit also affects the degree to which members of the existing orthodoxy resist the proposed changes. In the case of SA HealthPlus, it was the fear of „managed care‟ or the potential for outside interests to invade the health system and profit from their involvement in it that led to the re-constructing of the earlier and ambitious agenda for transformational change. There was simply too much cynicism about the potential for outcome based health care to be hijacked by groups with profit motives for it to be allowed to continue on its original course. Hence the re-structuring half way through the trial of the basic premises adopted by the SA HealthPlus group and hence the loss of principal leaders whose ideals and ideas had become a major threat to the organisation for which, ostensibly, it was working. Once reality becomes too complex for people, rational argument is no longer possible as a way forward. People want to simplify the complexities; they reject logic and formal thinking in favour of slogans, formulae and hope and they relinquish their participation in
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traditional processes in order to receive the new order, which may save them. At least it may save them from having to accept their share of the responsibility for the way things currently are and give hope for something new, maybe even better. However, although falling short of its ambitions, SA HealthPlus and its messianic leader, the inspirational mover of reality (defined below by Nadler as „the heroic leader‟) may have been on to something timeless and essential to the process of change. Although failing to effect transformational change, the SA HealthPlus approach to change may have been pointing to something potentially exciting and real. Certainly, the coordinated care trial processes have effected significant change in the way participants in it perceived the health debate and conceived solutions to it. The nature of the change objective may have itself changed and the possible outcomes of it been modified over time, but significant change has occurred as a result of the trial nonetheless. What has happened as a result of the trial says more about the way change really occurs than about the way some heroic, idealistic initiators of change would wish to see it occur. Lao Tzu, Heraclitus, Plotinus and others up to modern day psychoanalysts like Jung all arrived at the same point. They understood that the nature of man and society is essentially driven by contradiction, paradox and conflicting dialectical relationships beyond rational being and is linked by larger movers of minds and hearts than logic (friends, Romans and countrymen) and the pretence of order and control. Modern science is constantly being tested by those who apprehend the essential aspects of human nature and culture, illuminating things more fundamental to human behaviour than our common paradigms and conventions. This something is hope and faith devoid of guarantees and fraught with risks, but at the same time, promising salvation and holistic solutions which roll all the difficulties of pluralistic society into a new caption or a new panacea. Underlying this view of reality is also the notion that the nature of all natural systems is dynamic, dialectical and ever changing. As Heraclitus noted in the sixth century BC, “Everything flows and nothing abides, everything gives way and nothing stays fixed” (Fragment 20) and, “Into the same river we step and do not step” [6].
Through this approach to change and recognition of the dialectical nature of systems, many of the difficulties and injustices of the current health system could be, potentially at least, alleviated through fundamental changes to the premises upon which our current health system is based. The new model of „up front‟ investment of resources being promoted through the coordinated care agenda, could not only significantly reduce the need for „end point management‟ of illness, but also contribute to savings within the hospital sector as the demand for unplanned and preventable intervention is reduced. This would reduce the need for increased funding for costly infrastructure by reducing the need for end point treatment. That is, it would change the supply and demand dynamics between illness and treatment by preventing illness through education and early intervention. Unfortunately, in the SA HealthPlus team‟s enthusiasm to promote the coordinated care vision much detail was left unexamined, as is necessarily the case within the messianic change paradigm. The devil is in the detail, but the time was not right for confronting such demons. Nadler defines the kind of heroic leaders involved in such processes as having three main components that enable them to provide vision, energy and effect change processes for the good of the organisation. However, he notes that being heroic and visionary is not enough to
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clinch successful change [31, p221]. Leaders also have to be „instrumental‟ in that they need to offer structures, monitor achievements and offer relevant and appropriate rewards for those working for change within their systems. By establishing the main engine for change outside the target organisation, SA HealthPlus was able to run a small group of change agents who were ostensibly empowered, funded and encouraged to challenge the basic elements of the current health orthodoxy. The strategy was successful at least during the planning stage, but was unable to achieve its larger goals over a longer time. We also need to consider here that the SA HealthPlus strategy as conceived did not have to succeed as a formal trial at this stage to be successful as a change tool in the longer term. Perhaps it was sufficient that it modelled alternatives and rattled some foundations as a first step in the wider change process. Through this process, it has been possible to time the re-entry of the change group to the main fold and to engineer the way in which the old organisation actually moves into the new model of operation. The risk of having the change initiatives de-railed from inside was circumvented by inaugural the change managers creating a kind of mystical or semi-esoteric holy writ and keeping this very close to their centre. In many cases, the new orthodoxy was not clearly articulated even to the devotees and converts, mainly because the vision has not been cemented or fixed and because it essentially challenged powerful political ideals within the country. The process of change itself was left as the only clue to how things might unfold, and those who were not comfortable with this reality simply could not remain within the aura of the new vision. Even though there was no clearly articulated philosophy or direction provided, the main players were expected to remain confident and to keep the faith that everything would work out. Dissenters found it impossible to continue and this meant that the middle ground players were lost to the movement. “Replacing members who represent major and chronic resistance to the CEO‟s agenda is often the very thing that mobilises the team and organisation.” [31, p60]
Messianic paradigm shift is a term coined here to describe organisational change processes that rely heavily on elements of vision and leadership, in the first instance, from the top of an organisation. With this in mind, Nadler‟s comment on the change process is relevant. “A coach can be watchful for the old tricks sneaking into the new organisation.” [31, p93]
The leaders at this stage, although bound by common sense and current practice and united by logic and formal expression are expected by the organisation to, “…articulate an image of the future state that is realistic and compelling and better than the present state.” [31, p194]
Leaders are also expected to have an “ability to motivate through words and deeds and empower others through shared vision and persuasive communication.” [31, p195], but in the case of SA HealthPlus, much of this communication was not forthcoming. Due mainly to the urgency of completing functional business and meeting deadlines, business plan expectations
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and financial commitments, the processes essential to good communication were not always implemented. There was simply not time to invest adequately in good group dynamic practices and sound empowerment and consultation strategies to ensure the continued adherence of the initial group of operatives, but this is the paradox of SA HealthPlus and of messianic leadership. Although espousing equitable and democratic processes, the messianic leader is essentially leading from the front, urgently striving and keeping some distance between himself and his followers. This leads to parables, multi-levelled meaning structures and layers of initiation because reality remains fluid! There may also have been an element of deliberate isolation or quarantining of staff from the harsh realities of the change task as a way of ensuring they concentrate on the operational or functional aspects of their work. The investment of time and effort in establishing a shared vision, ideological framework and direction was seen to be inappropriate in the early stages. For this reason, the personnel recruited to the organisation became problematic. Task oriented, economic rationalists were added to the group in the hope that short-term functional approaches could get jobs done without wasting time on discussion and clarification of goals. This would come later after the pathfinders had carved a rough track or determined a vague trend for the policy makers and the systematic thinkers to define and articulate. In doing this, the pioneers neglected the fact that, “it is the people, not capital, technology or work processes that hold the key…” [31, p197]. The challenge in such models of change is to keep in touch with reality and to be constantly aware that… “A major problem is that the members of the senior team frequently are the product of the very system, structures and values that the re-orientation seeks to change.” [31, p226], and that… “Leaders will spend an increasing amount of time and energy shaping the vision and values of the organisation…In addition they will spend a significant amount of personal time focusing on the development of people, particularly selecting team leaders and managers at all levels.” [31, p274].
It has been argued that the utopian transformation change ideal of the initial SA HealthPlus project was launched on a messianic leadership premise. As time passed and the practical aspects of sustaining the pseudo-mystical style of change began to impact upon its organisation, it was no longer possible to continue with this approach. The various fears embodied within the new DHS, as well as within the individuals leading public health, served to reign the initiative in, unseat its leadership and transform it into a parody of itself. The lessons learned from this process could shed some light on the dynamics that exist between change management groups and the status quo in terms of the way in which such groups are managed to make the best of their window of opportunity within short political time frames. Certainly, although SA HealthPlus set out under messianic principles, its inability to democratise its systems and to involve and initiate a broad base of its staff into the real agendas associated with the initiative was wanting. Therefore, although sometimes necessary politically, the reversion to messianic leadership can not be sustained and is possibly quite dangerous within a democratic society. It is the way in which such programmes are transformed from „rebel‟ to „mainstream‟ programmes that determines whether they are ultimately effective or not. In this context, the
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ambitious utopian SA HealthPlus programme remains to be judged for its effect upon the current orthodoxy of health care in South Australia. It may have modelled some interesting processes for care and for change, but these processes are not yet enshrined within the ruling orthodoxy in order to sustain lasting change within the health system.
TRANSITION TO A WIDER MODEL Initially, SA HealthPlus carried the burden of change leadership. SA HealthPlus personnel took risks associated with change, their careers and their security within the status quo. As the trial drew to a close and this role was progressively relinquished and passed to the host organisations, various institutional changes occurred. Cooperation of stakeholders, their compliance with and their involvement in the SA HealthPlus experiment was very much determined by funding support. GPs became involved because of financial benefits; payments for care planning and coordination, payments for time spent at meetings, learning and researching, payments to acquire technological skills and payments in the form of new incentives. The health centres became involved because additional funding was made available through SA HealthPlus for service provision and patients became involved because they received more complete coordinated care that improved health outcomes. However, as the trial neared completion and the SA HealthPlus funds were limited, the change bonuses became smaller and extraneous support for the ongoing change initiative began to falter. SA HealthPlus was conceived as a change leader. It was designed to demonstrate new processes for care delivery and new ways for GPs and health units to work together to improve outcomes for patients and for the system. Any structures established during the trial that proved to be successful in achieving these outcomes would ultimately need to become the responsibility of local service agencies and health units if they were to be sustained. The health units were progressively weened off the funding support of the Regional Demonstration Unit (RDU) as the trial concluded leaving working systems in place to be funded and managed by individual health units and within current regional funding levels. In order to continue the coordination initiatives begun by SA HealthPlus, the ERHS needed to acquire the operational systems of the RDU and fund them within their own resources. Funding available through SA HealthPlus provided additional investment capital2 for the region to build the change process and develop new models of care. This additional venture capital or start-up funding could not continue indefinitely and if the coordination processes were to be successful in achieving a transition to a new regional model of care, local organisations would need to adopt the initiative and fund it internally. Their other option was to ignore the change progress initiated by the trial and allow the social, community and economic capital generated through the investment in change made through the trial to dissipate. This reality became obvious in the last six months of the trial when organisations realised that systems had been put in place that were beneficial to patients and might well be maintained beyond the trial. This encouraged change in the existing management processes 2
This investment was in community capital and in the change process since any change requires investment in people and processes and new systems.
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and demanded funding rationalisation to deliver the new packages of care and to fund activities differently. As indications reached stakeholders that the SA HealthPlus funding would soon end, agencies that had benefited from additional resources via the RDU began to wonder where their new funding would come from to retain staff and continue offering the additional support services made possible through the trial. Institutions like Aboriginal Health Services, Community Health Services, hospitals and the Division of General Practice had achieved significant funding boosts through their association with SA HealthPlus. Some clearly enjoyed their good fortune in being able to extract favourable funding arrangements from the SA HealthPlus project that had essentially been designed to buy cooperation through such generous arrangements. Hospitals charged SA HealthPlus excessively for access to their staff and support, GPs wanted high rates for relatively cheap office space, access to vehicles was reimbursed favourably and new funds were provided for services to ensure that stakeholders would support the trial. In effect, this support was bought at significant cost. Whilst the agencies and health units were self-satisfied about the short term benefits they were extracting from SA HealthPlus, the ultimate price for this extravagance and myopia would eventually be paid by the health service community itself. As stakeholders were asked to manage the cost of coordinating care beyond the trial or lose the benefit of the early gains made by SA HealthPlus, the true implications of their participation became more evident. In the process of buying participation, SA HealthPlus staff endured significant difficulties. Management staff faced constant opposition to the SA HealthPlus concept as stakeholders questioned the funding strategies of the model and were generally reluctant to become involved in the project. Senior executive staff members in DHS were also critical of the project suggesting that SA HealthPlus had no strategy for shifting resources from the acute sector and therefore no real source of funding for the coordination process. Ironically, early agreements with the SA Health Commission suggested that the Commission would direct this fund-shifting through budget adjustments and that, therefore, this was the SA HealthPlus strategy for resource substitution. However, with the advent of the new DHS no such funding structures were put in place! Similarly, service coordinators received less than ideal support from GP care coordinators, who were being paid well for their time, but seemed not to embrace the process as agreed when they became involved in the trial. Service coordinators, for example, completed most of the patient identification, enrolment and health assessment work on behalf of the GPs, a precedent worth noting in relation to the implementation of care planning item numbers from November 1999. There was also constant agitation from the Community Health group who were resentful of SA HealthPlus managing some of their work and scheduling services to be provided by community health care workers. This was seen to be encroaching on the territory of primary health with what was generally viewed as a “medical model of care run by GPs that was not really primary care at all”. In short, the price paid both organisationally and individually for the SA HealthPlus initiative was substantial and as time went on staff became less and less tolerant of this stakeholder antagonism. Whereas at the outset of the trial they would have been accepting of criticism and disparagement in order to get the trial under way, by the end of the project they were more inclined to deal with these differences of opinion more directly. People had gone from being challenged and stimulated by their role as change agents and being flexible and
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passive in their dealings with stakeholders to having more definite expectations of participants in the process. Whilst the attitudes of trial staff to the project dynamics changed, stakeholders seemed content to go over the same ground again and again. Some even wanted to take a step or two backwards into an earlier world where they held out with a siege mentality for increased funding each year in order to manage their mounting deficits. The initial fear of SA HealthPlus being a front for international managed care was not realised and this spectre had been transformed into a fear of modern, State-led, economically rational managed care. Health systems capital was not to be siphoned off overseas as a result of SA HealthPlus as some first thought, but constricted and manipulated by a cash strapped domestic economy that viewed health as an area in which efficiencies could be made and budgets reduced. Coordinated care seemed poised to assist State-led contraction of the public health sector. Had all stakeholders been more supportive of the change process in the initial stages, the end of the trial may not have been so financially stressful for them. After all, any funds put into SA HealthPlus by DHS were ultimately to be drawn from the pooled resources of the health units. Had this been more obvious to all concerned at the beginning, the units would probably have been less likely to abuse their access to short term funds and may have viewed the change process more as a collaborative partnership between themselves and the RDU. The real winners of the arrangement were the GPs who were well funded for IT and training, care coordination and care planning and who were poised to lead a new era in primary health care innovation.
CHANGE BEYOND SA HEALTHPLUS! The funds that SA HealthPlus used to establish a change process were derived from the existing DHS and Commonwealth budgets. Funds that had been used ineffectively, wasted or used to develop delivery models that were not continued would ultimately be deducted from health unit payments to the region. For this reason it was essential that any successful aspects of the new model that grew out of the SA HealthPlus venture would be developed further and capitalised upon. The system cannot afford another such investment without achieving substantial financial and health outcome benefits for the Region. A new environment is developing as a result of the trial in which fund pooling and payment to achieve specific health and financial outcomes could become the status quo. The Eyre Region now has the opportunity of being a leader in this new approach and making substantial gains from its association with the SA HealthPlus trial and, the formal trial outcomes notwithstanding, has participated in a major change initiative in rural health system development.
Chapter 2
ACUTE AND CHRONIC CARE APPROACHES During the last century we have seen the focus of health care move from dealing mainly with major infectious diseases, acute crises and physical trauma to, in addition to these ongoing demands on the system, addressing and increasing rate of chronic and complex illness in the community. This means a shift from dealing with short term and often fatal illnesses in the main to managing longer-term and debilitating chronic illness which is not immediately life threatening, but which, ultimately may lead to death. As our populations age people are developing and living with more and more chronic illnesses; illnesses which are often co-morbid such as diabetes, heart disease, obesity/metabolic syndrome, depression and anxiety and diseases of the circulatory system. The implication of this shift in demand across the health care industry is that more and more of our health dollars are consumed in dealing with and managing illnesses that are longterm and very costly in terms of service demand. The added complexity around this situation is that many chronic illnesses such as diabetes, cardiovascular disease, metabolic syndrome and arthritis need not occur to the extent that they do. Many illnesses in the chronic category can be prevented and if not prevented, managed effectively without major clinical intervention. The emerging model of health care is thus a model that involves long-term treatment and management of illnesses that hitherto have not existed in such proportions. In developed countries such as the US, the UK and Australia, over 65% of all health care costs accrue against the management of chronic illness, a situation which will become even more demanding as our current population ages and more and more people live longer lives with more and more co-morbid chronic conditions. The crises to which we refer in this context is inevitable, especially now that we are not only dealing with an ageing population with complex illness patterns, but younger generations are also developing more chronic and complex conditions earlier and earlier in their life. We therefore face the prospect of a sicker younger generation living alongside an increasingly ailing older generation. Recently in Australia we have become preoccupied with the potential adverse impact of our ageing population on our health and social systems. The projected cost of having increasing proportions of our population in the over 70‟s, retired, chronically ill and unproductive category of the demographic profile is emerging as a major challenge for governments and private insurers, so much so that the Australian government is now urging older people to remain in the workforce longer!
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In America, new approaches to the management and self-management of chronic diseases have been invoked to encourage and support older people to improve their quality of life and reduce their recourse to and dependence upon health care technologies, clinical interventions and health care management systems. Unless this is achieved, it is argued, the cost of looking after this emerging „bubble‟ of elderly people will become increasingly un-sustainable [32] as fewer and fewer (proportionately) younger people work to pay the taxes that support more and more ageing, unproductive, retired, sick and dependent people. We are at real risk, it is being argued, of having our economic wealth and productivity impeded and truncated by the financial burden of looking after high demand and high cost dependents at the aged end of the social demographic. There is, however, an alternative view of our ageing population emerging that highlights the assets we have in our elderly populations, and provides suggestions as to more optimistic views of the phenomenon of ageing. This emerging view incorporates elements such as flexible working arrangements and enabling the use of new, enabling technologies. This approach to our ageing dilemma is predicated on a concept of lifelong learning and social participation along with better preventive and early intervention systems of health care. It is argued that, if managed more creatively, the potential threats embodied in our ageing demographic might be turned into benefits. In addition, it is suggested that if preventive health care is not advanced rapidly our elderly may well increasingly become burdens on the economy at the same time as our younger populations also fall victim earlier and earlier in life to preventable chronic illness and lifestyle related diseases such as diabetes and cardiovascular disease. Under such conditions, two consecutive generations would then be depended upon the health care and social security system concurrently, creating an unworkable economic and social situation for Australia. The ageing of the Australian population in now an important focus for research and social debate [33]. What will happen to our culture and our social frameworks as the current population of ageing people continues to live beyond the age for which our current superannuation and welfare systems have been designed? What will our aged people do in the last 25 years of their lives after they cease formal paid employment as it is currently known? Will our pension funds be sufficient to sustain this group? Will our hospital and health systems become overburdened and ineffective or will elderly people find another way of living and contributing to society as they age well beyond the lifespan to which our systems and our society have become accustomed [34]? According to the Australian Bureau of Statistics (ABS) data, over the next 45 years the age structure of the Australian population will change markedly. „In 2005, the baby boomer bulge from about the age of 40 to 60 years is pronounced and the population pyramid tapers away quickly from the age of 60 years. However, by 2050 the population pyramid takes on the distinctive „coffin shape‟ as the population ages, longevity increases and fertility declines. People aged 65 and over will double as a proportion of the population increasing from 13% in 2005 to 27% by 2050.‟ [35, p510]
31
Acute and Chronic Care Approaches Age 80
2045
2000
1925
70 60
males
females
males
females
males
females
50 40 30 20 10 0 1.2
0.6
% 0.0
0.6
1.2 1.2
0.6 % 0.0
0.6
1.2 1.21.2 1.2
0.6
% 0.0
0.6
1.2
Some authors predict an unmanageable increase in the number of hospital bed days required by older people with the projected proportion of bed days used by people over 65 years set to rise from 47% in 2005 to 67% in 2050. This upward pressure on hospital resources will also place pressure on infrastructure and staffing numbers. Currently there are around 90,000 FTE nurses and 20,000 salaried medical officers working in Australian public hospitals [35, p512]. „With the demand for hospital bed days projected to almost double over the next 45 years, there will be a need for additional staff to cover this increase. However, at the same time as demand is rising, the health workforce is ageing, with high exit rates expected as doctors and nurses retire from the workforce.‟ [35, p513] However, even with this „ageing‟ profile of the population to 2050, there is uncertainty about whether this will mean increased demand for hospital bed days or whether these pressures will result in increased treatment and management of ageing patients in the community. Also, improvements in chronic illness management and self-management could have a significant moderating effect upon these trends; hence the massive investment currently in these programmes [36] by the Australian and other governments in the developed world as well as in other strategies to coordinate, integrate and manage health care and health services more efficiently across the system [9, 15, 37, 38]. In any event, there is now abundant evidence in relation to the onset of chronic conditions that much hitherto debilitating chronic illness is either „preventable or can be postponed and is therefore not an inevitable accompaniment of growing old‟ [39, p1829]. With the doubling of life expectancy in the last century it is now a realistic expectation that people not only live to be much older than they did in the past, but that we have the knowledge and health systems available to support a compression of morbidity into the last few years of life, making it realistic for people to expect, also, to be working productively well into their seventies and even eighties. Indeed, as Mirrlees suggests, in order to earn a „normal pension‟ in future, „people may have to continue working till seventy [40, p1882].
Chapter 3
BEYOND THE ACUTE CARE PARADIGM In recent years rural South Australia has been the recipient of significant funding to support a range of new primary health care initiatives. Much of this funding, additional to normal recurrent budgets in our health system, has facilitated effective change and development through demonstration and research projects across the State. The resultant work involves programmes such as: coordinated care trials more allied health services commonwealth regional health service initiatives quality use of medicines programmes community packages for aged care services Indigenous chronic disease self-management pilot programmes mainstream chronic disease self-management programmes ongoing chronic disease self-management programmes in Indigenous communities In addition to the resources and programmes listed above, funding was also provided by the Commonwealth to establish the South Australian Centre for Rural and Remote Health (SACRRH) and to develop the University Department of Rural Health in Whyalla and in many other centres around Australia. Whilst this new funding has led to substantial developmental work in chronic illness management in particular, one needs to ask whether the time might not be right now for these hitherto small scale change initiatives to be transformed into ongoing mainstream programmes, informed and guided by research outcomes to date. Is it now time to move beyond tentative chronic illness programmes and into mainstream reform? We have shown that there is much to be gained, both for patients and for the system, from improved coordination of primary care services and initiatives such as self-management programmes for patients with chronic conditions. Better management leads to improved patient health outcomes and can reduce demand for unplanned hospital and emergency services. Many admissions to rural hospitals requiring expensive services, in terms of infrastructure and staffing, could be either prevented or patients could be managed more effectively in the community as part of a wider primary health care programme [41].
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THE CONTEXT Our changing population demographics and illness trends suggest that more preventive care will be necessary in the future, along with more education and long-term primary intervention strategies, to manage the growing number of patients living with chronic conditions [42]. As technology and medical treatments improve, more and more people will be living longer with more complex chronic illnesses [43]. These projections, however, do not take into account the pressing need for us to prevent emerging generations from developing similar debilitating, yet possibly preventable conditions. Prevention is good business today, especially seeing that a failure to manage what is essentially preventable illness could cripple our health system and find us spending more and more of our already limited health system resources reacting to crisis demand rather than being more constructive with this funding. So why are we still using small-scale tactics to change the way services are delivered and the way patients with chronic illness in particular are managed? Major policy decisions affecting the nature of GP service provision, models of primary intervention and preventive care, education and training programmes, can now be taken on the basis of good evidence to ensure that our resources are being put to best use in future. Certainly, the Commonwealth has invested large sums of money in recent times to test and develop these approaches [44]. Why then are we not reforming health care and changing our spread of health care investments to favour prevention and primary care and making funds flow to where resources achieve best value outcomes? Could it be that the politics of health care funding still interfere with the logic of best practice and health care economics as change is implemented for policy reasons and not reasons of logic or scientifically demonstrated outcomes [44, 45]?
OVERVIEW OF ACHIEVEMENTS TO DATE In the past few years it has been shown that it is possible to reduce hospital admissions for some patients with chronic illness by coordinating, planning and managing service delivery more effectively [15, 46]. It has also been demonstrated that patients can gain improved health outcomes through more effective patient centred goal setting and planning and better coordination of care in conjunction with self-management programmes [47-49]. Based on this work, and an expansion of the Partners in Health care planning and goal setting process, [48, 50] it has also been demonstrated that these processes which build on the successful outcomes of coordinated care programmes [37, 51, 52], can also be applied effectively within Aboriginal communities [53]. In addition, it is now clear that we need to move beyond single illness intervention programmes to a more „Population‟ based system of preventive care and service management [54]. Chronic illness self-management programmes have been shown overseas to be effective in improving patient knowledge of their illness, their quality of life, coping skills and overall wellbeing [43, 55-64] as well as reducing demand for health care in some groups [65-67].
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In Australia, systems of care based on similar work overseas [66, p103] are already in place for some groups [49, 68] and showing significant improvement in patient self-reported wellbeing, clinical markers and health service provision efficiencies. In short, the efforts of recent years have not only demonstrated effective links between better primary care, improved wellbeing and financial outcomes, but have, in the process of demonstrating and researching these impacts, created significant momentum for change in our health care systems [69-74].
FIVE POINTS TO PURSUE So what is needed to ensure that the models and approaches we now know to be effective actually become part of a system of illness management and health care that is affordable and sustainable? From our experience with COAG trials discussed above, the Commonwealth Government‟s Enhance Primary Care (EPC) programme for patients with chronic illness and other community-based activities linked through projects such as the Sharing Health Care SA chronic disease self-management project, we are now in a position to chart more specific future directions for population health initiatives in rural communities. These directions are now emerging for consideration. Firstly, it is becoming clear that better coordination of effort around the provision of care for patients with chronic conditions can reduce unplanned crisis events that lead to excessive hospital admissions and over-use of health system resources [20, 75, p3]. Improved coordination of effort and resources can also reduce duplication of services whilst better patient record management, recall and care planning can improve patient self-reported health and wellbeing as well as clinical markers such as BMI scores and lipid levels in patients with cardiac conditions [49, p249]. The question of the long-term impact of increased longevity resulting from improved coordination and management systems, however, remains open for debate [76-79]. Whilst evolving population health systems can improve patient quality of life, we need more data on the long-term financial implications of such interventions for health service providers and funding providers. Secondly, social and community benefits will accrue in populations as a result of earlier intervention and education strategies that reduce rates of illness. Ideally, we could be spending more to ensure that our younger populations do not fall into the same illness traps and dependency on sickness management systems that others have encountered in the past. However, while most efforts are currently going into managing and supporting people who already have chronic conditions, limited will and resources are committed to the earlier intervention and prevention programmes that will be needed if we are to reduce the health risks that are beginning to impact earlier and earlier in the lives of younger populations. Thirdly, better IT and data systems [75, p4] will enable improved integration and coordination of patient records across the system and between funders and providers of health services. Health systems are currently exploring the potential of single patient records, recall systems, interfaces between hospital, GP and allied health services and other community support facilities. Care planning, for example, can‟t really proceed efficiently and effectively without such record integration as health providers need to know about the various components of a patient‟s care and be aware of the overall financial implications of the
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treatment systems they provide. Health care consumers should demand this level of comprehensive record management, much as they have come to accept it with their on-line banking, insurance claims and bill pay systems. Fourth, there is a growing involvement of and contribution from volunteers and community groups in the health system at present. The input of volunteer groups needs to be acknowledged and formalised to ensure that this valuable component of our community-led health related work continues and expands, especially in relation to the establishment and maintenance of community led chronic illness self-management groups. Self-management could become a major element of the fight against chronic illness and many of these initiatives are likely to involve volunteers and community-based team leaders and peer educators [61]. These approaches can be used in quite complex situations clinical situations [80]. To complete the list of optimistic options for the future, it is also clear that, although we have accumulating data from research both overseas and in Australia on the impact and outcomes of new chronic illness management systems, we need more definitive research in this area and especially in relation to the long-term cost/benefit impacts of the range of emerging chronic illness management programmes now available. For existing and evolving programmes to flourish, we need to be able to demonstrate not only that improved patient wellbeing results from such efforts, but that the provision of self-management programmes in the community can be effectively sustained over time.
Chapter 4
ECONOMIC AND SOCIAL BENEFITS OF SELF-MANAGEMENT As part of a chronic condition management demonstration project in rural South Australia between 2001 and 2003 [81, 82], service use by enrolled patients was tracked over an 18 month period during which time patients participated in a range of care planning and chronic condition management and self-management programmes. Data were aggregated for key health service costs; hospitals, GP services, specialist services and allied health services and changes in service utilisation analysed over time using random effects modelling. The changes over time for service use were examined and a Generalised Linear Model used because service use is recorded in the form of count data. The model of choice was a Poisson or Negative Binomial model with the final model dependent upon the distribution of the data. A Poisson distribution has equal mean and variance so a very large or very small variance relative to the mean will result in over-dispersion or under-dispersion respectively and produce a less accurate model. In this situation it is advisable and good practice to use the Negative Binomial distribution because it is more robust when accommodating wider data distributions. The standard deviations are large compared to the mean and it is only in the last 6 months that a more compact set of scores is obtained. Table 1. General Practice Visits Repor Reportt GP Vis its Time baseline 6 months 12 months 18 months Total
Mean 4.4167 3.9157 3.6092 3.4907 3.8493
Std. Deviation 4.15499 3.09919 2.81144 1.78927 3.07975
Varianc e 17.264 9.605 7.904 3.201 9.485
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SUMMARY STATISTICS Des criptive Statis tics N GP Vis its Valid N (lis tw ise)
Mean 3.8493
657 657
Std. Deviation 3.07975
Varianc e 9.485
The variance is very much greater than the mean, indicating over-dispersion, so a negative binomial model should therefore be used to assess the trend over time. Adaptive quadrature with 20 integration points is used in the model with subjects and time designated as random effects. The trend over time is shown below. The trend is weakly significant and whilst this trend is downward, since the coefficient of time is negative, data are widely dispersed. The event rate of 0.84 suggests that visits are decreasing at a rater of 16% at each time point.
4.40
GP Visit s
4.20
4.00
3.80
3.60
baseli ne
6 months
12 months
Ti me Figure 1. GP Visits.
18 months
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Economic and Social Benefits of Self-management Table 2. Specialist Visits Repor Reportt Spec ialist Visits Time baseline 6 months 12 months 18 months Total
Mean 1.2754 1.1103 .8250 .8027 .9949
Std. Deviation 1.85916 1.58165 1.28636 1.10812 1.48506
Varianc e 3.456 2.502 1.655 1.228 2.205
There is a decreasing trend here with standard deviations also decreasing, indicating a more consistent trend over the last two periods.
SUMMARY STATISTICS Des criptive Statis tics N GP Vis its Valid N (lis tw ise)
Mean 3.8493
657 657
Std. Deviation 3.07975
Varianc e 9.485
The variance is larger than the mean and so the negative binomial model is used. Subjects and time are designated as random. The result is significant at the 1% level and the scores are decreasing over time as indicated by the negative coefficient of time. The event rate of 0.82 indicates that visits are decreasing by 18% at each time point. A decreasing trend is evident and the standard deviations are also decreasing, indicating a more consistent trend over the last two periods in particular. However, the data is widely dispersed with the overall summary statistics showing this. The negative binomial dispersion is therefore used in the model. Table 3. Practice/Community Nurse Visits Repor t
Report
Nurse Time baseline 6 months 12 months 18 months Total
Mean 1.2114 .9714 .8446 .8345 .9564
Std. Deviation 4.62752 2.59757 1.33357 1.31103 2.71974
Varianc e 21.414 6.747 1.778 1.719 7.397
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Peter William Harvey
Speci ali st Visits
1.20
1.10
1.00
0.90
0.80 baseli ne
6 months
12 months
18 months
Ti me Figure 2. Specialist Visits.
1.20
Nurse
1.10
1.00
0.90
baseli ne
6 months
12 months
Ti me Figure 3. Community Nurse Access.
18 months
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SUMMARY STATISTICS Des criptive Statis tics N Nurse Valid N (lis tw ise)
Mean .9564
550 550
Std. Deviation 2.71974
Varianc e 7.397
The result is weakly significant showing scores decreasing over time since the coefficient of time is negative. The event rate of 0.88 indicates a decrease of 12 % in visits at each time point. Table 4. Allied Health Service Visits Repor t Other health prof es sional Time baseline 6 months 12 months 18 months Total
Mean 2.2481 1.5762 1.5658 1.4730 1.7003
Std. Deviation 3.52138 2.97195 3.24225 2.44795 3.06660
Varianc e 12.400 8.832 10.512 5.992 9.404
Other healt h profe ssi onal
2.20
2.00
1.80
1.60
baseli ne
6 months
12 months
Ti me Figure 4. Other Health Professionals.
18 months
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There is a decreasing trend here with the standard deviations also decreasing, indicating a more consistent trend over the last two periods. However the data is widely dispersed as shown in the overall summary statistics, hence the negative binomial dispersion will be used. Des criptive Statistics N Other health profes sional Valid N (lis tw is e)
584 584
Mean 1.7003
Std. Deviation 3.06660
Varianc e 9.404
The result is significant at the 1% level of significance. The scores are decreasing over time since the coefficient of time is negative. The event rate is 0.88, indicating that visits are decreasing at the rate of 12% at each time point. Table 5. Hospital Visits Repor Reportt Hospital Time baseline 6 months 12 months 18 months Total
Mean .4663 .3393 .3059 .2485 .3393
Std. Deviation 1.14008 .82499 .80712 .71060 .88539
Varianc e 1.300 .681 .651 .505 .784
A decreasing trend is again evident here with the standard deviations also decreasing, indicating a more consistent trend over the last two periods. However the data is widely dispersed, as indicted in the overall summary statistics. Consequently the Negative Binomial distribution will be used in the model.
SUMMARY STATISTICS Des criptive Statis tics N Hospital Valid N (lis tw ise)
666 666
Mean .3393
Std. Deviation .88539
Varianc e .784
The result is significant at the 1% level and scores are decreasing over time as indicated by the negative coefficient of time. The event rate of 0.64 indicates that that visits to hospitals are decreasing by 36% at each successive time point from baseline.
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Economic and Social Benefits of Self-management
0.45
Hosp i tal
0.40
0.35
0.30
0.25
baseli ne
6 months
12 months
18 months
Ti me Figure 5. Hospital Visits.
COST SAVINGS The estimates of the cost savings can be established with simulation methods with the differences from baseline to 18 months and the distributions calculated for each service. The data for each service are matched across subjects so that possible savings on one service are associated with the savings from another service. Monte Carlo simulation techniques are used to ascertain the most likely outcomes for each scenario and the savings are then totalled. By finding the best distribution for the overall savings, the risk can be modelled and the most likely outcome established. The simulation samples 50,000 data points and Maximum Likelihood is used as the guideline to the best-fitting distribution. Uncertainty parameters are introduced into the model to find the best fit [83, 84]. Table 6. Summary of Service Utilisation Service Type General Practitioner Specialist Allied Health Hospital stay (1 day)
Individual Service Cost $55 $135 $45 $1950
Mean Service Cost over time $241 $165 $97 $902
95% Confidence Interval $209-$274 $131-$198 $76-$117 $582-$1220
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The cost of the health care plan and self-management intervention is taken as $250 and this is subtracted from the overall savings per person. The benchmark figures and actual costs for the baseline data are shown below. The costs are now modelled by incorporating the event ratios into the figures above. The Negative Binomial model is used in all the costings according to the parameters of that distribution as well as the limits above. It has been established above that cost savings are indeed occurring over time for the patients concerned and from this we can assumed that this is the case for the general population, with the exception of the very few extreme cases where hospital admission rates are very high. If these cases were included in the analysis, such outliers would skew the overall results of the analysis. A figure of $250 is added to the total costs as this is the estimated combined cost of the care plan for general practitioners and of the self-management training intervention that around half of the subjects received during the demonstration project [85]. Separate simulations were carried out for each of the four areas above and subtracted from the overall savings and a further 50,000 simulations were also carried out for the costs at 18 months by incorporating the event rate and these are subtracted from the total cost at baseline. The results are shown below. The mean saving is $470 over the 18 months with this figure ranging from $239 to $649. The distribution is also seen on the boxplot and cumulative plots below. In 50% of cases, the savings are $480 or more over the 18 month intervention period; a significant amount when considered across all subjects and extrapolated to the wider population of people in the community with complex chronic conditions. Hospital savings, however, account for the bulk of the health service savings as can be seen from the rank correlations in Figure 9.
Figure 6. Overall Cost Savings.
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Figure 7. Inter-quartile Range for Savings.
The scatterplot above clearly shows a strong negative relationship between the hospital costs and total cost savings while the spider plot below shows the relative contributions to the total cost saving. Hospital cost account for the largest component of savings over time.
Figure 8. Probability Distribution for Cost Savings.
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Figure 9. Ranked Correlations (savings over time).
Figure 10. Scatter Plot (hospital costs).
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Figure 11. Combined Savings.
Since it is evident that general practitioner, specialist and allied health savings form a very small proportion and are weakly correlated with total savings, it seems more appropriate to concentrate on hospital savings. The above are based on a one day stay. The benchmark figure of $1950 is also variable. The cost savings are therefore conservative at best. Hospital figures taken in Whyalla at the time of this analysis showed a mean of 3.18 days with an associated cost of about $3000 per day. Simulation is now carried out on these new figures. Conservative estimates are used. The daily stay is modelled on a triangular distribution of minimum and mode of one day and maximum of 3 days. The costs are also modelled as triangular and are designated as $1000, $2000 and $3000 for minimum, mode and maximum. The event rate above is also incorporated into the model over the 18 month period. The cost of the programme ($250), is removed from the total saving and the results are shown below. The mean saving is $2220 and ranges from $535 to $6100. The cumulative graph below shows the proportions quite clearly.
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Figure 12. Savings distribution.
50% of the cases show a saving of $2064 or more. This is substantial. The less conservative estimates of bed days is now used. This is the triangular distribution with 1, 2 and 3 days used as the minimum, mode and maximum respectively.
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Figure 13. Total savings distributions.
The mean saving is $2716. The range is $584 to $6134. The cumulative plot is shown below.
50% of the cases show savings of $2644 or more.
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CONCLUSION It has been shown in previous studies that systematic application of chronic disease management principles leads to improved health outcomes for patients over time [58, 63, 70, 86, 87]. Patients report having better self-management skills and abilities, improved general health and experiencing less pain while showing better adherence to living a healthy lifestyle [14, 28, 41, 86]. In addition to the quality of life improvements resulting from chronic illness management and self-management programmes, an added benefit of this approach is the potential savings to the health care system resulting from reductions in service use as people seek less clinician interventions and are admitted to hospital less as a result of better management of their care through more extensive education and early intervention strategies. In summary, the potential savings in the hospital and allied health sectors as a result of better care coordination and service management are quite significant. When taken to a logical conclusion; that is, with this care planning and chronic condition self-management approach applied to entire populations, and with longer-term hospital stays also factored into the model, it is clear that major health systems efficiencies are possible. Such savings, once substituted into more extensive early intervention programmes would result in even greater reductions in the need for health services as populations become generally knowledgeable about their health and the care of people with chronic conditions is managed better across the health system. In this way the limited available health care funding (eg 10% of GDP in Australia) can be allocated more extensively to prevention and management programmes rather than, as is the case presently, almost entirely consumed in post hoc interventions in response to health crises and treatment of established illness [70, 87]. Whilst health improvements are implicitly valuable to patients and should be the main focus of any such health management programme, the cost savings should encourage more enthusiastic support and adoption of chronic illness management programmes across entire population groups.
Chapter 5
COMPRESSION OF MORBIDITY: LIVING A HEALTHIER AND LONGER LIFE INTRODUCTION Primary Health Care (PHC) in South Australia is being drawn to centre stage in the Labour government‟s health policy like in many places throughout the world. However investment in PHC often takes place in, at best an ad hoc, and at worst a chaotic way. It is approaching 25 years since Fries wrote his seminal paper on the Compression of Morbidity [43]. In Australia his conceptualisation has largely been confined to the academic literature where it has potential to radically change the way governments invest in Primary Health Care. The discussion that follows briefly outlines Fries‟ Compression of Morbidity approach and suggests two more contemporary innovations, which have potential to impact positively upon the health care community.
BACKGROUND TO COMPRESSION OF MORBIDITY In his paper “Ageing, Natural Death, and the Compression of Morbidity”, Fries integrates several related drivers of health care costs and determinants of health outcomes; length of natural life, increasing average length of life, chronic disease superseding acute disease, compression of morbidity and the compression of senescence. Each component is summarised briefly below. Length of natural life – human beings have effectively been capable of living to very old age since ancient times. That is, modern and ancient human beings would live roughly the same length lives if they shared the same life circumstances. The increasing average length of life is distinguished from potential natural length of life by reducing the occasions of premature death. While, in ideal circumstances, people of older and more recent times live until similar ages, in times past many more people died prematurely due to disease and trauma, thereby lowering the average length of life or “life expectancy”.
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Peter William Harvey In the earlier part of the 20th century diseases such as tuberculosis, pneumococcal pneumonia, tetanus, small pox and diphtheria accounted for a high proportion of morbidity and mortality. Thankfully, through the great work of many past scientists, much of the impact of these diseases has been mitigated. It should be acknowledged that Hepatitis „C‟ and HIV/AIDs continue to test the contemporary immunologists. The major diseases of the late twentieth and twenty first century are the chronic diseases such as chronic heart disease, neoplasms, chronic obstructive airways disease and diabetes. Compression of Morbidity describes the phenomenon where the onset of chronic disease and disability are deferred through prevention and management and as a result of this improved health management regimen the period of morbidity in human life is compressed between the point of onset and death. “By implication, the practical focus on health improvement over the next decades must be on chronic instead of acute disease, on morbidity not mortality, on quality of life rather than its duration and on postponement rather than cure.” [43, p133] The compression of senescence idea asserts that the necessary condition for healthy biological systems is their use. To put it simply, when it comes to human organ systems – “if one does not use it then one looses it”.
Evidence shows that in western countries, and in particular Australia, life expectancy and health outcomes are not equal for all groups in the community. Burden of disease studies show, for example, that the lowest quintile of income bears approximately twice the rate of heart disease than their highest quintile while Aboriginal people die significantly younger than their white counterparts in spite of some recent improvements in these trends [1, 88, 89]. For many Australians there is considerable opportunity, therefore, to reduce the incidence of premature death and extend the length of natural, illness free or illness managed life.
CONTEXT Fries proposed the idea of compressing morbidity, and therefore health care cost, into a shorter period of time at the end of life. Van Vleit demonstrated also that health care costs in the final stage of life decrease with age of death [90]. Together, these propositions suggest that if a health care system is orientated toward deferring the onset of disease and disability for the population faster that it extends length of life then there are overall benefits for health outcomes as well as for the financial viability of the health care system.
KEY STRATEGIES FOR REDUCING PREMATURE MORBIDITY AND DEATH Reduction of the social and economic disparity and disadvantage that drives inequality in health outcomes; Reduction in risk factors in the onset of disease and disability; Early detection and management of chronic disease;
Compression of Morbidity: Living a Healthier and Longer Life
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Aggressive management of chronic and complex disease; and Appropriate palliative care and acute care substitution. The fourth dot point concentrates on managing down morbidity and disability post onset of chronic disease while the fifth point seeks to substitute high cost end stage health care costs with more appropriate alternatives. Each of these components is now discussed in more detail.
NORMALISATION OF SOCIAL AND ECONOMIC DISADVANTAGE There are many examples of primary health care investments throughout the Australian health care system aimed at improving quality of life and health outcomes. For example: childhood nutrition programmes aimed at achieving a reduction of obesity for children, speech pathology aimed at overcoming speaking disadvantage and therefore educational disadvantage in the early years of life, remedial education programs aimed to overcome the lifelong consequences of poor educational outcomes, domestic violence interventions aimed to reduce the incidence of violence in the domestic situation and provide alternatives for victims and children from the long term consequences of domestic violence, school retention and transition programmes aimed at increasing the employability of younger members of society, parenting programmes aimed to improve the early years of a child‟s development for new babies and support new mothers, Indigenous health programmes aimed to overcome the health inequalities for Aboriginal and Torres Straight Islanders. In many cases these programmes have stemmed from a socio political route. For example, in some cases from the feminist lobby the Indigenous rights movements and from the social determinants of health perspective [11, 91-96]. These sociological drivers are in fact helpful in terms of garnering support for these programs. However, from an investment point of view the outcomes of these programs need to be assessed in terms of the equalisation of the long term health prospects of the population overall. In fact, usually these programs are targeted at groups who are or are likely to be in the future disadvantaged both socially and economically therefore bear a greater burden of disease in the community. The rational investment framework proposed here seeks to categorise the disadvantage of a population into various attributes, which, collectively, underpin the differential in health outcomes attributed to socio economic determinants. For example, as a product of the investments in primary health care there has been:
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Peter William Harvey a reduction in the difference in educational outcomes across the population, a reduction in the difference of access to culturally relevant health services across the population, a reduction in the difference of employment status across the population, a reduction in the difference in incomes available for expensing on socially relevant essential needs.
Investments in primary health care should be aggressively targeted at achieving such reductions in order to avoid them being dedicated toward politically palatable programs that don‟t ultimately defer the onset of disease and disability. Returns on investment will be long term (30-50 years), however, investments in the essential population characterisation will likely provide financial returns in the future.
REDUCING RISK FACTORS RELATING TO EARLY ONSET OF DISEASE AND DISABILITY The body of knowledge in relation to chronic disease management is now quite unequivocal in regard to a range of preconditions that lead to chronic disease and disability. Cardiovascular disease has been linked to familial history, gender and age as well as to high cholesterol (hyperlipidemia), high blood pressure (hypertension), obesity, inactivity, smoking, stress, diabetes and lung disease. Diabetes is linked to many of the same stress factors as cardiovascular disease and lung disease is associated with smoking and obesity. Cancers are also affected by social behaviours such as smoking, sun exposure, dietary intake and exposures to known carcinogens (e.g. asbestos). Osteoporosis and arthritic conditions are recognised as being associated with both diet and physical activity as well as having roots in familial genetic dispositions. Furthermore, it is known that these risk factors are not evenly distributed through the population. People from lower socio economic backgrounds typically have poorer nutrition and higher smoking rates. Other than age, gender and familial history, the risk factors are amenable to change both by medical/pharmacological intervention and behavioural change. It is clear, however, that the level of empowerment of a particular individual, their „locus of control‟ (internal vs. external) greatly influences the capacity of an individual to make different lifestyle and behavioural choices. Additionally, the cumulative burden of disadvantage decreases one‟s capacity for behavioural change. For example, a single mother trying to raise children on a government benefit might find it difficult to make choices to stop smoking or concentrate on nutritional standards of the dietary intake for her offspring. Furthermore cognitive function, be it a product of a persons educational experience or otherwise, is related to the lifestyle choices of particular individuals. Investments in supporting individuals to change their lifestyle choices and behaviours by providing not only information, but the necessary social and cultural support mechanisms can lead to a change in the risk profile of the population. Anti smoking promotion material has lead to reductions in smoking particularly amongst the highly empowered middle class middle aged social category. Smoking cessation should now be targeted aggressively at
Compression of Morbidity: Living a Healthier and Longer Life
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people from lower socio economic backgrounds and to people from ethnic backgrounds where the prevalence of smoking is higher and the compounded effect with other risk factors will aggravate their overall risk profile. Investments in behavioural and social change should be accountable for reaching defined population targets for specific sub categories of the at risk population.
EARLY DETECTION AND MANAGEMENT OF CHRONIC DISEASE In most cases the early detection of chronic disease and cancer leads to a significantly enhanced prognosis for the health care consumer. There are, of course, some cancers for which no treatment has been successfully implemented and it is arguable whether there should be screening tests for such cancers. However, for the vast majority of cancers and diseases which add to the burden of disease and health care expenditure, the earlier one is diagnosed the more likely it is that interventions will be successful in deferring the onset of the diseases related morbidity and disability and than quality life years will be extended. The Commonwealth Medical Benefits Scheme currently does not provide funding for screening programs. Indeed, population screening of relatively rare diseases (e.g. HIV) would add enormous costs to the system with a very marginal return in terms of funding or increased quality life years. However, appropriately structured and targeted screening is useful. The Commonwealth has recently initiated trials of bowel cancer screenings for populations over the age of 50 and under 75 as one excellent example, but there is little testing at the population level for the major cause of loss of productive life years – cardiovascular disease. A universal screening approach appropriately structured might show an adequate return on investment in the longer term, although, such programs need to be structured appropriately and targeted to specific populations. Smokers, people who are overweight or have a familial history of disease might initially undergo lipid testing. If positive results are shown, consideration may be given to the person‟s ability and sensitivity to major behavioural change. If he/she is capable of change then further testing may be appropriate. The material issue is that the relationship between the ability to change health related behaviours and to target investment in screening needs to be addressed. It is at these early stages of diagnosis where appropriately structured educational and selfmanagement programs can be deployed. Such programs are, in the broader scheme, relatively inexpensive. At a point of onset of diseases the consequences in terms of life impact are more tangible to the consumer and therefore more likely to drive behavioural change. There will of course be segments of society for whom behaviour change is less successful and therefore more interventions will be required.
AGGRESSIVE MANAGEMENT OF CHRONICALLY AND COMPLEX CONDITIONS After the establishment of chronic and complex diseases or severe disabilities, attention should refocus towards maintaining and reinforcing appropriate behavioural self-management but also on a coordinated delivery of appropriate health and community care services. These
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Peter William Harvey
should be structured and delivered in such a way as promoting independence and selfsufficiency. However, this requires adequate support systems for carers, adequate supply of information to consumers, true partnership dialogues with health professionals and coordinated health systems. Integrated health care infrastructure at both the organisational, information technology and funding domains is ultimately required. Much of the benefit of these can be achieved without necessarily fully integrating the governance arrangements of services however an integrated governance arrangement provides the optimal environment.
APPROPRIATE PALLIATIVE CARE AND ACUTE CARE SUBSTITUTION The models above show that much of the total cost of health care is provided in the last few years of life. In many cases patients would prefer to receive the care they need in a community based setting and preferably at home. The current Australian health system, however, has a bias towards directing its funding into the highly urgent care delivery services - usually in acute hospitals. This has left a very low level of investment in the more strategic, primary and community care sectors. For example, if a chronically ill diabetic acquires a lung infection, his/her general practitioner may not believe it is safe to send the patient home for monitoring on a daily basis. The patient in such a case would be sent to an acute hospital. In fact a district nurse might provide the level of monitoring necessary for the patient possibly with some telehealth technology. A range of such programs between the sentinel level of primary care available in Australia and the acute care system must be developed to provide alternative, less expensive options for providing more intense care than can currently be met by the primary care system.
MEASURING IMPACTS AND OUTCOMES IN HEALTH CARE Health care systems typically are more disposed to „buying‟ medical/surgical intervention rather than social interventions. For example, spending between $10,000-$15,000 on a hip replacement for an elderly patient is considered to be an appropriate investment. The patient will likely, as a consequence of such surgery, enjoy less pain in their daily life, remain mobile and therefore enjoy the benefits of physical activity, and generally appreciate a higher quality of life for their remaining years. An investment, however, in the supports necessary for a woman who experiences domestic violence may be considered differently. While the benefits of such interventions may in fact exceed those of the hip replacement the possible perceptions that the woman/victim is more able to influence her situation could compromise her argument for support.
CONCLUSION We have outlined above five categories of investment opportunity in relation to improving health status and reducing the impact and cost of chronic disease in the community. These are a need for…
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a reduction in the inequity in the social determinants of health, a reduction in risk factors, early detection and management of chronic diseases, aggressive management of chronic and complex disease, and appropriate community-based care as opposed to traditional hospital care The development of a set of measures for each of the populations in each category of this investment “portfolio” is our starting point. Clear targets allow us to know with whom we should be intervening in order to achieve what measurable change and what the likely benefit will be in terms of health outcomes and ultimately lifetime health care costs. We need to better understand the conditions which impact on the success or otherwise of our interventions. From a timing point of view we know we can invest in the fifth category with a shortterm return on investment while the first category will take a significantly longer time to have effect. But it is the first and second categories where the metrics are least well developed. This provides an opportunity for immediate investment in change at level 5 while providing the foundation for investment in the development of appropriate metrics in the earlier points of lifetime health care. With a clear and concise investment framework, appropriate interventions will be deployed to the people who are most likely to experience early onset of disease or disability. Through careful analysis, the investments and interventions will be structured so that they actually impact on the determinants of health and well-being and therefore defer the onset of disease and disability. By deferring the onset of disease and disability more quickly than we extend length of life, morbidity, and therefore health care costs, will be compressed towards the end of life. This will result in more quality adjusted life years for the whole population but disproportionately to the population who currently experience a higher burden of disease and disability relative to the rest of the population. Ultimately such strategies could help to reduce overall health care costs on a per population basis while improving health outcomes for individuals.
Chapter 6
THE SELF-MANAGEMENT RATIONALE Self-management and peer education programmes are being explored in many countries today as a means of improving patient life and health outcomes and reducing the incidence of preventable hospital admissions from complications associated with chronic and complex health conditions. Patients with a range of chronic health conditions are being educated and supported to learn the skills they need to manage their symptoms, medication and lifestyle in order to improve their quality of life and health status. This improvement translates into a reduction in the need for medical intervention, hospital admissions and specialist involvement in the management of chronic illness [97]. Further to the successful management of chronic conditions, it is possible to provide education, lifestyle and support programmes that prevent the onset of illness in the first instance. These strategies are particularly relevant for younger age groups who are currently experiencing earlier onset of lifestyle related illness than has been the case in previous generations. In addition to the documented rise in the incidence of chronic illness in Australia, we are now also becoming more aware as a society of another growing chronic health-related problem; gambling addiction and in particular, addiction to gaming machine or poker machine gambling. Whilst gambling addiction is often co-morbid with a range of other chronic conditions including depression, anxiety and even drug dependence, it is a socially determined condition that can be managed and cured. Cognitive Behavioural Therapy (CBT), and in particular graded exposure to gambling stimuli, is proving to be a successful strategy for helping patients overcome their urge to gamble [98, 99]. Early work in this field is now demonstrating that people with an uncontrollable urge to gamble can learn to overcome their problem through a short treatment programme and consequently carry on a normal life, free of the debilitating urge to gamble [100]. Whilst this treatment regimen is good news for problem gamblers, the logistics of implementing such a service to all those who might benefit from or need it (some suggest that more than to 2% of the population have serious gambling problems) presents a major challenge for service providers. In-sufficient trained therapists and the difficulties of distance and time mean that it is not possible for therapist to meet the demand for their services, especially in rural and remote areas. Clearly other solutions must now be found; some of which are already being employed such as videoconferencing, phone links and web-based
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services, but there is still an enormous un-met need for problem gambling treatment progammes in the community. By adapting the self-management peer education approach to chronic illness management for the treatment of gambling addiction, new programmes could be tailored to suit a peer-led self-management context in which peer educators could be trained to support people with gambling problems and take on the role of self-management coach in the therapy process. Peer education and self-management could form a new frontier in the treatment of gambling addiction and the expert patient approach that has been shown to be successful in the management of chronic disease might now feasibly be applied to the treatment of problem gambling [80]. It has been shown in research in Australia and elsewhere that for many chronic health conditions, patients can be educated and supported to manage their symptoms, medication and lifestyle to improve their quality of life and health status [14, 41, 81, 101]. This improvement translates into a reduction in the need for medical intervention, hospital admissions and specialist involvement in the management of chronic conditions condition [102]. Further to the successful management of chronic conditions, it is possible to provide education, lifestyle and support programmes that can prevent the onset of chronic conditions in the first instance [73, 87]. As a result of self-management programmes and more coordinated systems of chronic illness care it is now possible for many diabetics, for example, to manage their illness effectively and improve their day to day quality of life [61, 65, 103-107]. Other chronic conditions, including asthma, cardio-vascular disease and even mental illness can be managed in the same way through educating and empowering patients with the knowledge necessary for them to help themselves. This approach to chronic care is also driving organizational change through health services [71, 72] and Divisions of General practice [108] and underpins major reforms in the health industry [109]. In addition to the success of selfmanagement and other initiatives for people with advanced chronic conditions, indications are that the suite of chronic care support programmes now available and being promoted around the world as a strategy for improving health outcomes and health systems efficiency should focus, for best effect, more on early intervention and prevention [101, 110] and even on education of school age cohorts [111]. Some authors have suggested that the health care business actively alienates and dispossesses patients, making them dependent upon medical intervention and powerless to effect changes in their own lives. That is, the business model around health care, medication regimens and lifestyle management is professionally packaged and driven by supply rather than demand, with all of the economic, financial and social implications that follow from this phenomenon [112, 113].
KEY SELF-MANAGEMENT PRINCIPLES Self-management programmes have emerged as adjuncts to structured systems of chronic illness care through which patients can learn to manage the key elements of their condition to improved quality of life and reduce the recourse to unplanned and preventable hospital admissions. The Coordinated Care Trials in Australia, for example, showed that some patients
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are more receptive to this approach than others and that, in the short term at least, better coordination of care reduces demand for services for patients who have a recent history of hospital admissions [14, 28]. A patient‟s ability or inclination to self-manage was a key factor in achieving positive outcomes through these trials and consequently the Australian Government embarked upon a National chronic disease Self-management initiative; the Sharing Health Care programme, in order to increase the uptake and application of selfmanagement strategies in chronic illness care. This programme also demonstrated the short term benefits of self-management options for patients with complex health care needs [41, 81, 114]. In essence, the success of self-management programmes consists in the ability of people to work together to help themselves; for trained peer educators to encourage others to learn how to manage their conditions and their lives more effectively by taking back responsibility for and control of aspects of their health care that have historically been out of their control and in the hands of the health industry monopoly. These major changes in the way chronic illness care is managed have, according to Glasgow, „…come about for multiple reasons, including the greatly enhanced data on the effectiveness of diabetes self-management, the significance of psycho-social factors in diabetes and the increasing penetration of diabetes empowerment and other evidence-based self-management approaches‟. [115, p1046]. The trend towards chronic condition self-management is being driven, in part, by increased demand for health care as our populations age while, at the same time, the number of health professionals available to provide services is not growing commensurately with this demand. Some aspects of patient care are therefore now being managed in different ways such as care being coordinated by GPs but delivered by a growing team of allied health providers and nurse practitioners and supported by new integrated funding mechanisms such as community care plans and new Enhanced Primary Care (EPC) funding [36, 116]. The notion of consumers taking back control of their lives and their health in this way is quite revolutionary and although, as outlined above, this is driven as much by system need as by individual initiative and is having the effect of putting people back in charge of their lives in a new and exciting way. For many aspects of people‟s lives and health need, for which they have hitherto relied solely upon their GP or the hospital system to manage, people are now finding they are able to do for themselves. Diabetics monitor their blood sugar levels and manage their diets with input from diabetes educators, asthma patients manage their medication and monitor their condition closely without the need for direct medical input and mental health patients are also becoming more responsible for the day to day management of their illness. The American Association of Diabetes Educators (AADE) site a similar list of key skills and behaviours that help to ensure sound self-management. They have identified seven selfcare behaviours in the literature [115]. expert consensus and clinicians in practice, healthy eating, being active, monitoring , medication taking,
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EXTENSION OF THE SELF-MANAGEMENT CONCEPT Self-management in its many forms and permutations is essentially about the individual learning how to deal with aspects of their lives that have progressively been institutionalised by one system or another; health, for example. In this process, and as our lives become increasingly complex, more and more aspects of our daily being are influenced by outside institutions. We no longer service our own cars, we are not able to manage the power provisions to our house, we don‟t grow and manage many components of our food production processes [4, 117, p237], we are losing control of ownership of the seeds from which we grow our food to multinational companies who lease them back to us year by year. Even the preparation, cooking and presentation of our food is being increasingly outsourced and removed from us! Similarly, health care has become the preserve of highly specialised and highly trained professionals and quite removed from the individual. Our health, like our modern car, has become a technical business which is entirely out of the hands of the consumer. Given these modern trends, however, it is still possible for individuals to take back control of aspects of their lives that have been lost to institutions because we either do not have the time or the space to manage these things or because they have become, like our cars, too technical for the average person to contemplate. At the hard end of the spectrum in health self-management, patients learn to take over some of the monitoring and management aspects of their chronic conditions such as diabetes monitoring and dietary intake. However, the process extends far beyond this to individuals learning early in their lives about how best to manage lifestyle choices in order to reduce the risk of conditions such as diabetes from manifesting in the first place. In this context, self-management is about individuals taking more ownership of and responsibility for the way they live and work and as such, the selfmanagement process is part of all aspects of our lives, including the management of adverse conditions such as heart disease, asthma, mental health conditions and addictive behaviours such as problem gambling, to list a few.
Chapter 7
THE ETHICS OF SELF-MANAGEMENT At its core, the idea of self-management carries with it an imperative for personal action and control over the things in one‟s life. As one advocate of more natural health care puts it, „if you want something done right, you have to do it yourself‟ [118, p3]. Self-management, in the wider sense then, is about being as much in charge of our lives and our destiny as possible and, in the process, ensuring that each life lived is lived to its maximum potential for the minimum cost to the larger society. A person might live to be 90 years of age, but if they do this at the expense of the larger society and as a person who does not contribute to that society then the best value is not achieved for those 90 years. In addition, if the person lives for 40 of those years with high dependence complex health conditions, unable to work or contribute to society as a consequence of such illness then the net benefit to society of those years of life may not be substantial. On the other hand, if a person is educated in the ways of effective living, contributes to society as a student, employee and taxpayer until they are 70 years of age and then lives on as a diminishing, but effective member of society until they are 90 years of age, manages their life and their lifestyle to avoid preventable illness and, as a result of such an approach to life experiences very little disability or sickness, then their net worth to themselves, their family and to society will be substantial. Simply put, good health is economically and socially advantageous and accrues both social and economic capital to society. From a purely utilitarian perspective [119, 120], the aim of such an approach to life would be to minimise the down side, the cost and the disability of one‟s life in order to maximise the contribution to family and society in both social and economic terms. The concept of disability adjusted life years alludes to such an idea, but for most of us, this abstract concept needs to be translated into more practical components. For example, what does it cost to keep me alive for 90 years as opposed to the sum of the contributions I might make to society during this time? That part of the equation is simple. However, accidents and unavoidable disability notwithstanding, how might I arrange and manage my life in order to maximise the positive aspects of being and minimise the negative? What strategies should I follow to ensure, for example, that I reduce the amount of time I spend sick and unproductively (ie living on sickness benefits and not contributing to the economy) and extend my healthy and productive years as far as possible?
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Many cultures and groups have different ideas about this…ie from advocating the benefit of living basic lives without the trappings of modern society, like the Amish people in America, to using all of the modern advances of science and technology to cleanse and purify our bodies to overcome the ravages of modern polluted city life like Michael Jackson advocated and did. If we were to identify some key aspects of modern living that carry detrimental implications for our lives and health and that therefore should be avoided, the list would include… the ravages of pollution and poisons in our environment, the stresses of fast living creating work and financial pressures, ingesting of fast, fatty, salty and low nutrient foods, lack of physical exercise in our daily lives, increased use of drugs (tobacco, alcohol and prescription) in daily life, road accidents, anxiety and depression leading to family break down and suicide, environmental changes leading to increasingly dangerous weather cycles, poverty, lack of education, limited employment prospects and opportunities to prosper. The list goes on, but in this short, initial sketch of deleterious aspects of modern daily life that have been linked to poor health outcomes and reduced longevity it is clear that it is possible to fashion a life that is relatively free of the main negative factors and influences in our lives. If we are relatively fortunate (ie educated and employed) we can choose the way we work and live, limit our financial excesses and possibly grow and cook most of our own foods. In addition, we can choose to drink clean water rather than alcoholic or sugar based processed drinks and we can limit our use of recreational drugs. We can also monitor and manage our consumption of wasteful and useless items such as plastics, household items that bring us no benefit and, overall, reduce our profligacy in these matters by choosing to conserve our time, money and resources. All of these strategies are examples of how life self-management can improve the quality and quantity of our effective lives, reduce our incidence of preventable, lifestyle related illness and free our health system from un-necessary demand. By doing more for ourselves, with less, we are both reducing our demand on the environment and its resources as well as empowering ourselves to take control of as many aspects of our lives as is physically and intellectually possible. This is a concept of self-management beyond the management of illness or health problems per se; it is positive self-management of life and health rather than, as is the case currently with chronic illness management models that focus on selfmanagement of sickness and impending death. From the wider economic perspective, though, what might happen to our constant growth economies if we stopped our over consumption and our over eating that results in our ever increasing need for and consumption of health care services? Would the economy grind to a halt or would it just self-regulate to accommodate people‟s choices to take more control of their lives and to do more things for themselves? Would market emerge to support such
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approaches to living and would those markets then drive our economy as current markets for modern consumer items do? Certainly evidence is emerging from major global events such as the Copenhagen Climate Change Conference in 2009 that our production systems cannot be expected to achieve constant growth without having major and immediate detrimental effects on our environment and our lives. We are being forced to recognise, not only that our use of natural resources (water, soil, forest, coal, oil, minerals, fish stocks, animals and plants) over the past 300 years has been damaging, but that if we continue to consume and pollute in this way we will destroy the basis for our overall survival of the world as we know it [121, p10]. Behaviours need to change at the international, national, local and personal levels in order to prevent a melt-down of our environment [121, 122] and one key plank in such emerging awareness and action for change is the idea of self-management in relation to health and lifestyle. Such an approach will complement and maybe even lead change in other aspects of our current social and environmental crisis.
ETHICAL EATING Peter Singer argues, in his book „The Ethics of what We Eat [4], that not only do we need to think about our food from the point of view of how it impacts so directly on our health, but about how the food is produced, at what cost and to whom and about the morality of its production. Other writers are now pointing out the folly of converting corn and grains into meat through lengthy, inefficient feeding regimens to produce food that is too expensive for most consumers and that, into the bargain, consumes enormous amounts or resources. A kilo of steak takes around 5000 litres of water and 7 kilos of grain and soy product to produce. As well as the cost and folly of such inefficient conversion rates, we need also to be more cognizant of how these feedlot cattle, sheep, pigs and chickens are actually treated in the feeding and slaughtering process, what chemicals they are forced to consume to keep them alive and how much of this chemical residue actually turns up, ultimately, in our food at a later stage [4].
OVER-CONSUMPTION A major problem facing the West at present is its addiction to over production and over consumption in order to stimulate and maintain economic growth. In the process consumers are forced to consume more food and commodities than they need, with all of the ramifications of this for their personal and communal health and wellbeing. Such over consumption is not only bad for our health, it is bad for our environment in terms of the demands that such production puts upon our natural resources both in terms of what we take to produce things and the pollution and waste we produce in the process. Both Tim Flannery and Jarred Diamond, in their recent books provide extensive examples of how other cultures have destroyed their societies by over consumption and waste [123-126]. The idea of sustainable, balanced production and consumption carries with it the rider that the cost of ameliorating the damage of production should be carried by the industries concerned. As we are well aware in Australia, there is no such thing as a free lunch. Ultimately, the full price of our production and consumption cycles will need to be paid. At present
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individuals, communities and nations have approached this problem by cost shifting; making someone else pay in some other way for such destruction such as local communities in Indonesia for the loss of rain forest and animal habitat, Pacific Islander communities for global warming and increasing violent weather resulting from climate change, the consumer of petrol and fuel for drilling accidents and so on. Larger scale self-management, focusing on individual health and avoiding un-necessary illness that results from over-consumption of fats, sugars and meat protein, for example will act as a mediating factor in the production and commodity promotion process. If people are educated to understand that they don‟t need a $5000 walking machine, but rather a half hour walk in the park each day, expensive walking machines will no longer be viable products in the market. We could spend our time and effort better on keeping our parks healthy and safe instead of creating an industry that keeps us at home, talking to no-one, running on the spot and going nowhere. Surely the folly of this is obvious even to the most roundly socialised consumer of useless products. Surely the folly of this is obvious even to the most roundly socialised consumer of useless products.
THE EVOLVING HEALTH CARE INDUSTRY In modern times we have privatised universities and tried to make them run like businesses and tried to sell education and degree qualifications into the market as if they were a real commodity. As a result, there is no community on campus any more. Students today study on line because it is too expensive to pay real teachers and consequently we no longer communicate with each other face to face. If we persist in trying to make universities run like tyre factories then we will have to be content with the fallout of university graduates becoming as generic in their nature as the latest radial tyre. It is not possible to quantify and commercialise intellectual development without losing the very essence of what the learning process is about; creating a supportive environment in which new ideas will grow and flourish. If students are pre-occupied with the cost of their time in study, have to work almost full time while studying to pay their fees and then end up owing the government a fortune in student loans, the student experience will not be productive of the kind of graduates we need; thinking, creative people with the skills and energy to repay society for investing in their education. Students may even do their sums and realise that the business of obtaining a university degree these days is simply not viable because it costs too much, there is too much of a risk of not finding a good job at the end of the course of study and the time and money spent on the whole thing could be better put into buying a home or running a small business. Once people start making these decisions, the university‟s position is in peril as is the very basis of our epistemology and way of life. Further to the university paradigm folly, is the idea that health care can be a profitable business and that its services should be provided like commodities in a consumer market. Firstly, the provider of health care services can drive the market up and create demand in order to fund or justify its existence or in order to pay for expensive medical degrees by way of the exorbitant fees and charges paid to specialists. Secondly, there will always be greater demand for health care than any community can afford to meet. There is a current situation in South Australia, for example, where it is projected that the entire State budget may soon be consumed by the health care industry if
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demand for health services continues to grow as it has for the past 20 years. By making health care into another industry like a bakery or a garden products store, investors will seek out higher returns in this industry with a captive consumer population and drive up the cost of care. In such an industry there is no motivation to curb demand or to prevent illness at its root because the returns to the health industry from dealing with sickness are too attractive to the corporate sector. As was discovered during recent research in Australia, health care providers are not keen to reduce hospital admissions if the main source of their funding accrues through providing high level interventions in expensive surgical units in hospital [71]. Why reduce the rate of sleep apnoea (mainly caused by obesity and metabolic syndrome) if the health care system is paying physicians to see these patients hand over fist and actively funding the breathing kits that help get them to sleep at night? Why reduce the number of type 2 diabetes patients when a huge industry now exists to manage them? What is driving this madness? Just the raw profit motive and phenomenon that money goes where it gets the best return, or are there other reasons, other actuarial calculations and insurance structures that dictate that sickness is better for business than health. On the surface such an argument seems flawed, but it may just be the case that there is more to be made from industries that both create the lifestyle choices we make and then make even more money from patching up the walking wounded casualties of such a system. Noel Pearson, an eminent leader of Australia‟s Aboriginal people, makes the same point about the business around Aboriginal disadvantage; in particular the way the welfare State provides funding for Aboriginal communities that is appropriated by mainstream business and services, but which does not bring lasting benefit to Aboriginal people. Pearson refers to this as „the gold mine of poverty‟, picking up on the observation of the American Economist Thomas Sowell [127] that there is profit to be made from the welfare funding that flows to the poorer sectors of our communities; money that does not advantage the poor, but paradoxically, finds its way back to those who don‟t really need it. Over consumption of food and conveniences is making us lazy, obese and sick. In a free market we therefore have two choices; either invest in preventing the problem by educating the populace about changing lifestyle and consumption habits or invest in managing and treating the downstream problems that result. Clearly the market has decided that there is more money to be made in treating sick people, in running hospitals and diagnostic businesses than there is in the former option. Perhaps it is time we switched our preference with regard to our dominant health paradigm because no State can afford to consume its entire GDP on caring for the sick. It might just turn out to be better business to keep our people educated, employed and healthy rather than oppressed, ignorant and sick. The idea of funding health care providers to create and maintain health is not new [128, 129]. Perhaps this industry‟s time has genuinely come as communities see the contradictions in our current health system that, in the main, has nothing to do with health at all. The business of the health industry is sickness, just as the business of middle class bureaucracies is built on attempting to alleviate poverty. In other words, the sick and the poor and the socially disadvantaged are today seen as good business. Rather than building our communities on health, wealth and equity, we have decided that it is much more profitable to work with a deficit model. How strange it is that we embrace a philosophy that creates social problems, illness and war as the backbone of successful business and of our current economic model!
Chapter 8
SELF-MANAGEMENT: AN IDEOLOGICAL PERSPECTIVE The idea of self-management and people taking more control of their lives and their health in particular is consistent with a raft of empowerment and self-help ideas that underpin a certain view of reality. This view is that humans, wherever possible, should be encouraged to take responsibility for their lives and their life choices rather than becoming reliant upon the State or the dominant political system to manage their day to day affairs. This implies that a stable, free and healthy society is one in which citizens are educated and supported to get on with their lives to the mutual benefit of all. Further, such self-empowerment ideas are consistent also with living a free and independent life; a life in which the maximum benefit can accrue to individuals and society for the minimum cost [130]. From a modern environmental perspective, also, this means living as well and as efficiently as possible on the planet while taking as little as possible from it or impacting as lightly as possible upon it in the longer term; in short, reducing the human footprint on the earth. It is not mere coincidence that rising rates of obesity and chronic illness mirror increases in consumption in the developed world, consumption often fuelled by government subsidies to increase production of high return foods and commodities such as beef and chicken [131, p87]. Even more alarming, however, is the fact that the new consumption fad that is causing disease across our populations is also impacting adversely on our environment and on world communities generally. It is estimated that 5000 litres of water and 7 kilos of grain products are needed today to produce a kilo of grain fed steak. In essence we are wasting our resources in the mass production of beef for the well-off in our communities, for example, and being encouraged to consume more of this high cost commodity to the detriment of our health. Ideas such as these have been in the public arena for the past quarter of a century, but neo-conservative economic and social agendas (Thatcher in the UK, Reagan and Bush in the US) have stalled the uptake of alternative approaches to economy and production and held up a move to more sustainable consumption across the planet. It has only been recently, for example, that consumers have realised the need to reduce their consumption of fuel oil and hydrocarbons by using smaller and more economical vehicles, making public transport more efficient and accessible and increasing opportunities for people to walk or ride bicycles in cities. The same message is gradually seeping through in relation to excess consumption and the impact this has upon our environment generally and upon our personal health specifically.
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Fundamentally, therefore, there is an argument to be made that much of our chronic disease burden; metabolic syndrome, type 2 diabetes and cardio-vascular disease in modern society is due to artificial production systems that force us to consume foods that make people sick [131, p91]. This is to say nothing of the detrimental effect such consumption of the world‟s grain reserves for the production of lot fed meat for the top-end market is having on the under-developed world. The rich are consuming more and more, and getting sicker and sicker as a result while the poorer populations have access to less and less. Many authors have written about the adverse impacts upon individual health resulting from large disparities in wealth across populations [3, 11, p204] The even more shocking side of this equation, however, is the burgeoning business that surrounds the health care delivery process in developed economies; almost as though sickness is seen as an economic commodity and its treatment and management a high tech and high end business of modern society. It appears, however, that the fundamental question about why there is so much sickness in the first place is never asked, almost as if it is natural for so many people to be developing complex and chronic health problems. Could it be that our economy relies on such sickness to generate wealth just as we rely on the over consumption of resources and high-end foods like meat and chicken to build and sustain the myth of constant economic growth and un-ending profit. The only way that such approaches to economy can be „profitable‟ is if the cost of all the natural inputs to production are not properly funded or accounted for; costs such as free access to water, government subsidies, the cost of rehabilitating and sustaining land and environments and the downstream costs of poison and illness on our overall health and wellbeing and productive capacity. This current flirtation with excess, the consumption driven economy and the ideology of continual growth therefore really benefits no-one ultimately. Over-consumption is killing us in the west while at the same time depriving the poor of access to their basic dietary needs in their communities as more and more of the world‟s food is used to fatten cattle to produce meat products that people don‟t need to eat in order to live well. In essence, even the companies profiting from this production craze are living on borrowed time (and money) because in the end their enterprises will fail when governments can no longer afford to subsidise them and when it becomes essential that production processes actually factor in the entire cost of producing commodities like food or family cars. We are beginning to get the message about consumption of gasoline and large cars, but the idea and impact of over-consumption in relation to food and diet has not yet dawned on many of us in the west. Why are so many people in the US and Australia, for example, so overweight? What has changed since the 1950s when Americans, like British and Australians, were lean and hungry in appearance? Was this a result of their parsimonious lifestyles, their hard physical work or was it the lack of excess in their diets and lifestyles generally? Eventually the costs associated with such excess consumption will limit the behaviour around the use of gas-guzzling cars (in Australia the price of gasoline has gone from 50c a litre in 2000 to $1.50 a litre and rising in 2010. „You‟re eating that (steak) today, but you won‟t be in ten years. Would you drive a Caddilac? Ten years from now you will realise that eating that chunk of meat is as crazy as driving a Cadillac.‟ [131, p66]
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Costs such as recycling waste, preserving soil and environmental flows in our rivers and waterways and paying the full cost of using limited water resources will inevitably render the age of gross consumption obsolete. In the mean time, and until the natural forces of economy bring things back into balance (that is when governments stop using tax money to subsidise wasteful and inefficient industries and to keep them artificially in business) individuals, through a self-management strategy can begin to influence markets as well as improve their own health.
THE WEALTH OF NATIONS Both Adam Smith and Karl Marx devoted their lives to studying the phenomenon of wealth creation and distribution [130, 132] with Smith, like Malthus [133, 134] and others, arriving at a model of naturally moderated and regulated growth based on the conversion of resources into wealth. Marx, on the other hand saw the driving factor in wealth creation as „surplus value‟ that accrued, due to the class struggle, disproportionately to those who controlled the means of production. Neither Smith nor Marx considered in their models the real cost, ultimately, of the so call „free‟ resources that become the life-blood of human endeavour. Until recently, all economic wealth was seen as value added by mankind to our naturally occurring wealth and resources, with the main argument being about who owned the means of conversion of raw materials into tangible wealth. The bounty of resources available to man for conversion was taken as a given and at no cost to the production cycle. The wood and coal harvested to fuel the industrial revolution, for example or to drive our polluting war ships into battle was counted as only the cost of mining and converting it for use. It is only in recent times that the true cost and legacy of this profligacy is accruing to our production accounts. In future we will have to pay the cost of cleaning up the mess from past production and henceforth, factor into our models the full cost of doing business [121, p135]. These full costs of business might just frighten us into being a little more careful with our resources, our food and our own health. Similarly, in our health maintenance businesses, in future we will need to fund both the cost of illness and the cost of prevention if we are to evolve a sustainable health care system. Today we see things differently. The world is quite a small and finite place and its resources limited. We cannot continue to use oil, iron ore, fish stocks, rivers and aquifers as if there are free gifts from God to be exploited without limit. The impact of mankind‟s existence upon natural systems is beginning to feedback into and limit potential for continuous economic growth and development. In this context, the struggle we face is no longer one between peasant labourers and owner / exploiter capitalists extracting surplus value as so called profit, but one of balancing the needs and real cost of human survival against ensuring a sustainable environment upon which our communal and individual wealth ultimately depends.
Chapter 9
THE PARADOX OF SELF-MANAGEMENT Self-management in the context of chronic illness is popularly promoted internationally now as not only a possible solution to the health problems of our increasingly chronically ill and ageing population, but as part of a new wave of consumer-led and volunteer managed health care initiatives. Consumers are now indicating that they want to be more involved in the management of their lives and their health care options whilst, especially in rural and smaller communities in Australia, a shortage of clinicians means that health care as we once knew it is rapidly changing. This new emphasis on self-management however raises crucial questions about where consumer action and control in health care should end and where clinical and medical intervention might begin. Recent work in chronic condition self-management has highlighted the fact that consumers of health services, that is, patients in the system, are more likely to commit to making behavioural and health related lifestyle changes if they are led to these changes by their peers rather than by health professionals alone who are apt to confront patients with alien concepts and clinical demands. In this process, despite the health professionals‟ best intentions, they may actually be restricting the patient learning and engagement processes that are necessary to bring about lasting health related consumer empowerment and behaviour change. This chapter examines some ideological implications of the new wave of selfmanagement approaches to chronic illness from an ideological perspective and highlights key elements that underpin a genuine effort to promote health related lifestyle change. The concept of patients or consumers of health services being assisted to enhance their selfmanagement potential is a progressive one, especially in light of our existing professional monopoly on health care. We are now, for a range of reasons, on the verge of a treatment paradigm change in which existing institutional models of care are being challenged. Can self-management overturn the current institutionalisation of health care and allow consumers to take back some responsibility for the management of their behaviour and ultimately for a large part their fundamental wellbeing?
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THE CONTEXT There has been much discussion about the efficacy of chronic illness management programmes, care planning, regular health assessments, preventive primary health care and the role of self-management in these processes in recent times in Australia. More and more attention continues to be devoted to advancing the idea that the adverse impacts of illness and disease can be mitigated successfully through individuals with chronic conditions learning more about their condition and then assuming more responsible and healthy approaches to their lifestyle and to the management of their health and wellbeing [105]. That is, we can improve wellbeing and reduce the financial impact of illness upon the health system through educating people about more positive and constructive approaches to healthy living and by developing consumers‟ skills necessary for their positive and constructive participation in the management of their care [65, 135]. Such efforts, however, remain focused on people with chronic illness currently and are yet to grapple with the longer-term earlier intervention and prevention of illness that will be necessary if we are to create improvements in overall health and wellbeing in future generations. For the present, however, we are faced with the immediate challenge of dealing with people who already have chronic diseases, but in the long-term we can‟t simply wait until chronic illness becomes evident and then learn to manage it. We will eventually need to prevent much of this illness burden from occurring in the first instance as well as putting resources into managing existing chronic conditions if we are to improve the long-term outcomes of our healthcare system [42]. In the same way that modern communities will need to both manage the damage caused to the environment through previous production as well as investing in more sustainable and healthy approaches to living today, our health systems will need to invest in both retrospective management and future mitigation of preventable illness if we are to have a sustainable and effective approach to population health [136]. The approach is simple on the surface, but although self-management appears to be a wholesome idea Wilson argues that we need to examine more carefully the motivation behind movements such as the self-management trend in health care. Changes in patient empowerment and level of involvement in health care need to be placed within the context of personal and institutional power relations and health professionals must, accordingly, examine whether such trends are about saving resources, reinforcing the social construction of chronic illness or facilitating a real shift of power to the consumer [137,p 141]. Others argue that the empowerment of patients and consumers within the health care system might even drive up demand as consumers learn more about their needs and as their expectations for their health and wellbeing rise [138]. This appears to be especially the case in relation to the baby boomer generation [42, 65]. “The nation‟s (USA) 65-year-and older population will swell from 35 million in 2000 to 53 million in 2020 as the baby-boomer generation reaches the age of increased chronic disease prevalence. Many baby boomers bring to the health care system a high level of sophistication. In the view of one analyst, baby-boomers will accelerate the movement and awareness of selfcare and wellness and will irreversibly alter the traditional doctor-patient relationship” [65]
It would therefore appear that the self-management phenomenon embodies a degree of paradox in that for generations consumers have been increasingly alienated from the complex
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process of maintaining health and wellbeing and health care has become more and more the preserve of highly trained professionals. Consumers have been persuaded to abrogate their responsibility, some say brainwashed [139, p202], for their lives generally as they are trained in numerous ways to be passive consumers of a vast array of services and support structures as essential components of everyday life. What chance do discerning consumers and self-managers have against such overwhelming forces of social conditioning and control? The creation of passive consumers has been central to the development of the wider consumer society upon which much wealth and economic growth is currently predicated in the west. Growth depends on ever-increasing consumption, but such consumption can also be bad for our health! Interestingly, we now appear to be more cognizant as a culture that the orchestrated alienation of consumers may be economically detrimental to both the individual and society generally and that better-informed, participating consumers might make for healthier and more functional communities [11]. Blind consumption, at least in the case of health care, is becoming undesirable from a systems perspective. People are being encouraged to become „responsible consumers‟ and „partners‟ in the system rather than mindless consumers of everything they can get their hands on when it comes to health care.
BEHAVIOUR CHANGE Mechanic, as early as 1979, questioned the wisdom of a general approach to behaviour change, suggesting that there is little correlation between patterns of behaviour and the idea of responsibility for actions generally or for health specifically [140]. He suggested that rather than focusing on educating for generally responsible behaviour per se we should concentrate on specific problem areas like smoking, exercise and diet so we can change behaviours known to correlate with adverse health outcomes. The idea of „general‟ responsibility for health is far too broad a concept and the psychological and social factors that motivate human behaviours (eg smoking and high risk activity) are implicit in powerful, deep seated causes of human behaviour within society of which we have only a very „primitive‟ understanding [140, p1144]. This is to say nothing of the inherent contradictions, as outlined above, in socially „trained consumers‟ being encouraged to become „re-trained partners‟ when it comes to their health care, but not in relation to other aspects of their lives as economically and socially constructed consumers! Others agree that the task of changing entrenched health related behaviours is too difficult and they oppose chronic disease self-management approaches on the grounds that these methods are not based on sound medical practices and that patients may suffer from too many medical complications requiring professional management for them to be allowed to rely on self-management techniques [141] to help them live more empowered lives. This may be misrepresenting the idea of self-management somewhat, at least as it is defined by Von Korff [142], when he says that self-management… „…involves [the person with the chronic disease] engaging in activities that protect and promote health, monitoring and management of symptoms and signs of illness, managing the impacts of illness on functioning, emotions and interpersonal relationships and adhering to treatment.‟ [7]
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The criticism stands, however, that whatever social or behavioural aspects of chronic illness management we employ, there can be no substitute for the proper and timely medical intervention required to manage the clinical complications of chronic illness. Perhaps a more useful way of conceptualising the self-management phenomenon, therefore, is as a partnership between the consumer and the health professional in which each of the partners takes control of the elements of health care and daily living that are relevant to and best managed by them. Also, broad-based behaviour change strategies that encourage generally sound approaches to health and wellbeing are not effective across whole communities. The good health and prevention message reaches only certain population profiles [73]. At the same time we have evidence suggesting that some groups in western society are becoming sicker [88] rather than healthier in spite of the good health messages that abound. Their training as passive consumers may be making them sick and this training has become so deeply a part of their consciousness that re-training or re-conditioning for prudent consumption in relation to health and wellbeing is a contradiction too difficult, if not impossible for some people to resolve. Another common assumption is that a patient‟s concern about their health is a primemotivating factor in behaviour change. This is not the case, as smoking messages, alcohol advertisements, healthy food pyramids and gambling text messages attest [143]. Simply hearing a message doesn‟t equate to an effective stimulus for change. This view of the deep-seated nature of causation of human health-linked behaviour challenges the motivation of initiatives like chronic illness self-management programmes that are predicated upon patients accepting greater responsibility for their health in an environment where they are conditioned generally to neglect responsibility for their actions. They will be unable to take responsibility for their own health until they know it matters and carrying on destructive behaviour is often far less debilitating for people in the short-term than attempting to change their behaviour [144, p5]. To add further complexity, such responsibility is expected to manifest itself, in most cases of chronic and complex illness, after a lifetime of adverse social and environmental influences or, at least, of less than optimal health related behaviour. In short, the desired end of self-management programmes for some groups in society might be nothing less than an archetypal conversion; Paul on the road to Damascus or Saint Augustine after a life of debauchery [145, p56]. Applying Mechanic‟s version of human motivation and behaviour, as is the case for many an experienced physician, we might be better to concentrate on other methods of reducing risk related behaviours; methods other than simply appealing to everyone‟s better nature and their hitherto absent sense of goodness and compliance. This appeal, presumably, is designed to miraculously kindle a sudden bout of responsible self-management in spite of the other powerfully contradictory social messages that may be influencing their behaviour. We are primarily social creatures and our state of wellbeing is generally created out of a social environment, which determines our behaviour, or as McMurray has it, „health is a sociological construct‟ [146, p29]. That self-management programmes might be worthwhile weapons in the health management armoury is not questioned here. However, without our tackling the larger ideological drivers of poor health, self-management can only really be one alternative solution to our problems; an alternative that may not be suited to large numbers of people who, for various reasons, may never be effectively engaged in the process.
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It is probably more likely, therefore, that in Australia, as in the US, the „Stanford approach‟ to self-management [60, 62, 64] might be less about the vagaries of human goodness and more about reducing the impact of chronic illness upon a flagging health care system whether it be a private or public system. Self-management in this context is really about managing at the level of the self rather than about access to systems level approaches to managing and reducing the overall social and economic causes of chronic and complex illness in the first instance. It is about promulgating an ideology of individual control and causation rather than accepting the domination of the larger systems influences over behaviour and quality of life! Self-management processes may therefore be ignoring the wider community health ideologies and health care determinants and focusing, instead, on developing the ability and skill of individuals to make a difference to their health even though their health status might be the result of numerous social, political and economic determinants and antecedents [147]. Although we know there are many and varied factors that influence consumer behaviour we may be naïve in thinking that we can somehow convince those who carry with them the reification of a lifetime of adverse habits suddenly to „take it on the chin‟, manage their conditions more responsibly, avoid unnecessary hospital admissions and reduce their use of costly medicines and other health services. Some argue that such changes in behaviour may actually be engineered for social and political expediency as patients are coerced into behaving in this new, „third way‟ approach to illness management which „both liberates and subjugates at the same time‟ [137]. All of this effort, because of the present imperative for concentrating on our current and burgeoning problems associated with chronic illness, may also be missing the next wave of health problems; those emerging as a result of new „high risk behaviours‟ such as drug and alcohol use and sedentary lifestyles for which we are yet to see the long-term physical and psychological manifestations. How are we planning to self-manage this emerging juggernaut? A person may well know that certain behaviour is „risky‟, maybe even fatal, but they will still indulge in the behaviour because the forces driving it are more immediate than the fear of any potential adverse outcomes that may result from the behaviour. People will indulge in such behaviours irrationally and without concern for the potential consequences of their actions as these consequences are still too far removed from present consciousness to be relevant to the individuals concerned. The above issues and contradictions accepted, the following discussion provides an analysis of some of the key elements of self-management and determines which components may be achievable and which are more politically motivated and perhaps more fanciful. In the process, it is perhaps instructive to turn to the education community for insight on selfmanagement and participation as a way of seeing just how consumer responsibilities are affecting life outcomes for whole communities in this sector.
THE IDEA OF SELF-MANAGEMENT Participation and involvement within the education community today implies ownership of the processes and outcomes of education by students and families and schools. It implies joint responsibilities for outcomes and a social contract between families and school
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communities through which greater outcomes can be achieved than if families abrogate their responsibility for the education of their children and leave schools to work in isolation towards learning outcomes for students. Students left in this one-sided situation do poorly in schools, but those who work in partnership with the education system achieve more. The parties have common goals and agreed values that underpin the curriculum and the structure of the education system and they are in the system for common ends. Such benefits are actually achievable, in spite of what may be seen as a less than perfect ideological framework of teaching and learning through which our young people must pass. In the health arena, there may be real gains to be made through improved selfmanagement in spite of the many other opposing and negating messages through which the perceptions and behaviours of consumers are constructed. The issue of self-management is now squarely on the health system agenda for many reasons and as suggested by Bodenheimer… „The question is not whether patients with chronic conditions manage their illness, but how they manage.” [65, p2470].
Self-management in the health context is also about partnerships and collaboration and about patients working with the system as partners rather than as passive recipients of end point treatments and health care services. This does not imply that patients are left to their own devices to become responsible in isolation for their wellbeing. Self-management in health, as in education, consists in the establishment of shared understanding between stakeholders and the development of a common agreement about purposes, goals and processes for achieving those goals. In the following sections some of the key elements of the self-management social contract are explored and an attempt is made to put to rest some of the more cynical misconceptions about the ultimate motivation behind the recent preoccupation with the idea of self-management in health promotion activities. The defeat of rising elements of cynicism about self-management programmes, particularly in view of the obvious ideological slant towards individual responsibility and behaviour change, however, may not be a simple task. Even though, as one patient says, „Overall it is my responsibility to look after my health, my body and my medication‟ [148, p26] and self-management does help patients with chronic conditions, there is also a wider agenda in health prevention to intervene earlier in the cycle of illness and at a systems level to prevent individuals from developing chronic conditions in the first place. This however, at least in the context of chronic illness self-management, is another task altogether that must be addressed along with our efforts to improve the management of those who are already living with chronic conditions.
PARTNERSHIPS The idea of self-management in the context of chronic illness implies cooperation and partnership between the various service agencies working with patients with chronic conditions. Providers with sometimes contradictory and antagonistic approaches to health service provision, and to each other, are encouraged to work together collectively and cooperatively in loosely formed primary health care teams. This is being effected through the
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application of processes such as the Medical Benefits Schedule (MBS) Enhanced Primary Care (EPC) funding system in Australia, community care planning and coordination of services around individual patient need [9, 38]. Under these arrangements, funding is tied to specific health outcome criteria facilitated through teamwork and planning and requiring that certain levels of collaboration and accountability are evident before payment for services can be generated. To date, the majority of funds (EPC funding) have been channelled through GP practices where practice nurses are employed to liaise with allied health teams, pharmacists and private providers to construct a care plan to address the social, emotional and clinical needs of eligible patients. The chronic disease self-management (CDSM) approach links to this care planning process through the development of goal setting and behaviour change strategies that encourage and support patients to participate in the care planning process and to set patientcentred goals for themselves with which they are more likely to comply than extraneous goals set for them by health service providers. In addition, chronic disease self-management approaches introduce generic education programmes to assist patients to learn to cope with the symptoms of their illness and live more effectively with chronic illness generally [48, 61].
PATIENT LEVEL PARTNERSHIPS – HEALTH SERVICE ACCESS As well as the partnerships and relationships that are required at a system level to support the self-management and care planning approach, patients also form partnerships with their principal carers, their nurse coordinators and their GP with a view to taking more control of the management of their condition. Through these partnerships patients work with health service teams and other patients in support and self-help groups to learn about how best to manage their condition and how to access, more effectively, the services they need, when they need them.
COLLABORATION AND SERVICE INTEGRATION Through these two levels of collaboration and cooperation (system level and patient service level) it is possible for patients and carers to develop a more comprehensive and supportive team approach to understanding the social, emotional and medical conditions with which patients are faced. Importantly, the patient centred goals, set in the process of patients learning about how to self-manage, enable the translation of hitherto medical approaches to care into more holistic approaches in which a wider range of factors impacting on patient health and wellbeing are considered in illness management and treatment [48].
SELF-MANAGEMENT In many ways, this translation of problems from a medical to a personal level of analysis is crucial in gaining patient adherence to and compliance with the elements of the care plan through which they can pursue health improvements [48, 50]. Through this process patients
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are able to develop a more personal understanding of how their illness impacts on their lives. This understanding, together with the process of direct patient involvement in goal setting and planning, supports their ongoing commitment to working with and managing their symptoms. Commitment comes from participation and understanding, not from being told what to do or through passing responsibility for managing their wellbeing to other people such as health professionals, carers and friends.
THE KEY ELEMENTS OF REALISTIC SELF-MANAGEMENT The self-management strategy being developed for the CDSM programme through goal setting and care planning consists of six clear premises for patients to follow in the adoption of a self-management approach to their condition [50]. Patients are encouraged to… learn about and understand their condition, take an active part in decision making with the GPs and health professionals when managing their condition(s), follow an agreed treatment plan (ie care plan), monitor symptoms associated with the condition(s) and take appropriate action to manage and cope with the symptoms, manage the physical, emotional and social impact of the condition(s) on the life of patients and carers, adopt a lifestyle that promotes health and does not worsen the symptoms or the impact of their condition.
CONCLUSION Chronic condition self-management implies that patients are being supported to become more involved in the management of their lives. In the past some aspects of care have been taken out of the hands of the consumers and monopolised by professionals, perhaps to the detriment of the patient. Some critics also suggest that the self-management process is individually focused, and has the implication that individuals are responsible for the state of their wellbeing in the first instance. Such a view of health management, it is argued, does not address the larger social and economic determinants of wellbeing or acknowledge that individual existence is determined by factors outside of the individual‟s direct sphere of influence and control. However, in taking into account these ideological criticisms, it appears fair to conclude that these arguments are not particularly relevant to the self-management process that is emerging in practice and which is described here. Rather, self-management is more about patient level empowerment and involvement in the management of their lives and their chronic conditions. This approach does not attempt to grapple with larger social and political issues in the health care debate, but takes as its starting point the fact that people do have chronic conditions and that improvements can be made in their quality of life through a
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structured learning and self-management programme irrespective of the origins or causes of those conditions. For the ideologically concerned who want to see a more revolutionary community approach to health system reform and development, the above argument for self-management may not be convincing as it ignores much of the fabric of our culture that contributes to the development of chronic illness in the first place. However, if we acknowledge that, for whatever reason, people will develop chronic conditions, a process that can assist them to achieve improved quality of life whilst living with such conditions can make a significant contribution to improving community health and wellbeing. The financial benefits of such approaches for individuals and community may also be significant, although we are yet to produce sufficient data over long enough periods of time to confirm this thesis. It may well be, as others argue, improved health outcomes and quality of life all come at a cost [46, 76, 77, 79, 149] and that we cannot expect to reduce the cost of health care through such processes, but merely to moderate the rate of increase in demand. There will always be upward pressure on demand for services within a system with a finite capacity to meet such demand [137, p140]. It is more likely that other wider social, economic and political factors will impact on the overall health system demand before these relatively minor (in the scheme of things) CDSM initiatives. Along with other chronic illness strategies and population health approaches, CDSM programmes may serve to improve health service efficiency and contribute to an improvement in overall patient wellbeing. It is unlikely that we can look to these strategies, given the nature of our health system, to really reduce costs or save money per se! These programmes are more about improving the quality of the outcomes that can be achieved for patients in collaboration with the various elements of the health care system. Whether improved self-management and patient responsibility for managing their health leads to extended longevity and even increased health care costs as more people live longer and more independent lives with chronic illness, is yet to be determined. Possibly the cost factor will need to be played down in Australia and improved quality of life emphasised, since our system is not driven by private insurance programmes to the extent of the American system, for example! With a „universal access‟ system, we are therefore more inclined to look to these new programmes as a means of improving quality of care for patients rather than for them to generate cost savings and profits for investors.
Chapter 10
POPULATION HEALTH The purpose of this section is to explore the concept of „population health‟ or management of the health of populations as opposed to the current orthodoxy within the „health‟ system, which is preoccupied with the management of the manifestations and cost implications of illness. In this context, the idea of population health encompasses the concept that individual and community wellbeing is grounded in access to social and economic resources in society. Access, or lack of access to these fundamental components of life has a direct impact on the health of individuals and therefore the notion of population health is based on the premise that through the improvement of the total life environment of communities and individuals we can achieve improved health outcomes for all [147]. This idea runs counter to the current and prevailing ideology of health care, which focuses on illness in terms of the individual and assumes that individuals are in control of and responsible for the factors that determine their health. They clearly are not, at least not to the extent that they can be held totally responsible for their ultimate health and welfare outcomes. There are other more powerful social forces at work in this arena! Consistent with this idea of wider causation in population health approaches, a central premise is that traditional scientific and logical positivist approaches to outcome measures in the health care system may be measuring the wrong things in an attempt to define the overall wellbeing of the communities they serve. That is, they measure life expectancy or disability adjusted life years, or admissions to hospital or access to services and avenues of care as surrogates for or indication of the overall health and wellbeing of communities. Such an approach is ideologically driven and as such does not encompass a full range, or plurality of methods. „Biomedical researchers (for example) ignore community and societal factors in their studies and discount evidence related to these issues.‟ [147, p 362]
In addition to the above parameters, we need to be measuring different elements of our systems if we are to apprehend the components that contribute to health rather than illness [150, p462]. The corollary of this proposition is that by defining the parameters of healthy societies, and hence the antecedents or determinants of healthy individuals, we might be able to extend the option of healthy living to more people and wider population groups. In the process we could also reduce the currently increasing rates of illness, chronic disease and
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institutional dependency across communities as our populations age, and compress morbidity into fewer years of illness and sickness to expand our years of high quality or illness free life [151, p72]. This might reduce demand for and expenditure on acute care services provided to people suffering from essentially preventable conditions, provided that the compression of morbidity thesis is substantiated over time [59]. In turn, it would then be possible to free more resources (assuming the proportion of GDP devoted to health remains relatively constant) for building healthier, more informed and participatory communities with a relatively reduced dependency on acute care systems. This cycle of prevention and health management takes account of a wide range of factors that contribute to wellbeing and, conversely, of the equally extensive range of factors that contribute directly to ill health. Environmental factors, social factors, educational factors, lifestyle factors, work and leisure conditions all contribute, along with genetic factors, to the individual‟s potential to live a healthy fulfilled life [152, p277]. Although total freedom from illness and disease may be „but a dream‟, it is clear that the way we manage our interaction with our environment and our changing lifestyle factors, will determine the degree to which we are able to maintain and improve our health and wellbeing [153, 154, p7]. In the health industry we are yet to quantify the long-term health costs of lengthy exposure to chemicals and sprays [155, p143]. Also, the real impact upon community and individual health and wellbeing of living in remote areas, unbalanced and excessive diets, increasing psychological and emotional pressures on individuals [93, 156, 157], failing businesses and lifestyles and of maintaining healthy and natural Aboriginal communities is yet to be determined. This kind of view of health, however, is apt to link so many factors and determinants directly to health that the health system is probably at risk of being perceived as the axle upon which our entire economic and social system turns. In such a situation, the task of identifying, measuring and testing outcomes would become enormous, a situation that, in part at least, contributes to our tendency to persevere with simplistic mechanisms of analysis of community health and wellbeing outcomes. It is also unclear, to date, just how effective health system reforms have been in improving access to care and promoting improved health outcomes [158, p110, 112]; the evidence is simply not there to say that all this work has been truly effective [154, p157]. However, we now appear to be moving beyond simplistic analyses to a more complete understanding of the dynamics beyond pure medical components that contribute to community and individual wellbeing. In the process we are seeking more meaningful measures of the health outcomes achieved through the deployment of our finite health care resources. It is this quest for meaningful indicators and measurements of social and individual health with which this paper is concerned and which leads us to some key questions that underpin much of our collective work on health reform. As Bloom noted… “At the heart of health reform everywhere is a search for a better answer to essentially the same questions: how is a health system best funded, how should provision be structured, how can equity be ensured and protected and how can quality be monitored and maintained.” [159, p349]
We seek to know how to invest our finite resources to best effect in the community whilst maintaining standards within the existing illness management business and at the same time
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attempting to expand the population interventions that support health and wellbeing in the community [160, P941]. As we are poised to move beyond the era of community health programmes, community information and health promotion to a whole of population approach to managing wellbeing it is important to acknowledge these various stages in our evolution. We are about to enter the era of systems integration and coordination for improved health outcomes that will see resources and services that have hitherto existed in virtual isolation from each other being linked together to support whole community programmes to build healthier communities [9]. Such investments recognize that wellbeing is not about medicine or treatment or institutions in isolation as much as it is about creating healthy environments and communities. This emerging view could require numerous sacred economic, social and medical cows to be challenged. “It also seems clear now that if health promotion and disease prevention, at present much championed, are ever to achieve parity with acute-care medicine, we must be prepared to rethink today‟s medical priorities to make the potential gains in health status efficacious. More generally, a serious transformation will require taking money away from the acute-care sector, including research into the cure of many lethal diseases, and using it instead for prevention research and massive educational efforts designed to change health-related behaviour”[10, p19]
This concept recognizes that much illness and chronic disease in our community today is the direct result of the social, economic and material conditions of our existence; conditions that are amenable to change and, along with this change, able to effect significant reductions in the incidence of preventable disease and illness in our communities. Such ideology suggests that whilst humans are frail and cannot generally live well much beyond 80 years [161] there are many ways of ensuring that most of the years to eighty are lived relatively free from debilitating illness. Such an approach might therefore reduce the demand for acute care made by people who suffer from essentially preventable conditions.
POPULATION HEALTH – THE CONCEPT It is clear, given the escalating cost of health care and our ageing populations, that strategies for reducing the incidence of illness at a population level will need to be developed urgently if we are to avoid the massive social, humanitarian and economic burdens associated with this growth in demand [162, 163]. In spite of a trend to privatization and the reliance on markets to control demand resulting in reductions in public programmes in health and other areas, there is an emerging consciousness that social health programmes are quite resilient and effective strategies for delivering desired community health outcomes [160, p925]. In fact, even managed care programmes were designed around universal access because of the need to reduce cost shifting and the exploitation of vulnerable groups by more powerful and financially well off groups in the community [164, p689]. Koyama, writing about the serious health and economic problems associated with the burgeoning health service demand in Japan suggests that,
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Eyles extends the concept of population health to include a need for inter-sectoral policy and action and for considering the salience and roles of different stakeholders (individuals, families, community and governments) in enhancing the health of populations [166, p32]. With this broad sweep of causation and responsibility, we may even be faced with the enormous difficulty of including every aspect of individual and social life, in the ideal situation, as contributing in one way or another to population health and wellbeing. Lewis observes, in relation to development in population health that the concept is a „we‟ notion in a „me‟ world and full of social and political contradictions while, at the same time, appealing to something fundamental to us all. It will certainly challenge many of our institutions if we suddenly begin rewarding people for preventing illness rather than treating it, or as Lewis suggests, “pay the person who prevents heart disease more than the cardiovascular surgeon” who repairs it. He summarises the paradox of population health in this way. “Would that population health were as simple as a hernia repair. The more we know, the less anyone can do in isolation to effect meaningful improvement. All boats rise with the tide, but who shall harness the moon?” [167, p66]
Butler-Jones refers to this phenomenon of including all things in the causal loop of health as „health imperialism‟ [168, p63]; its counter phenomenon being „health determinism‟ where such complex health determinants are seen as being beyond human control; a kind of Malthusian view [169] of human health and wellbeing. However complex the causal links in health, evidence now abounds as to the deleterious effects of certain lifestyle choices (smoking, physical inactivity and an inappropriate diet) on individual and population health outcomes [165, p231-232]. Much of the burden of chronic illness can be avoided through changes to lifestyle and living practices and through education and self-management support, especially in developed countries where more and more people are living to old age as a result of improved infection and disease control [170, p134]. Our task now is to implement programmes that we know to be effective in minimising the adverse impact of environmental and lifestyle factors upon our overall population wellbeing [171, p283] even though such work may inevitably raise many questions about our resource allocation priorities. This is not to suggest that our ageing populations will avoid disease and ill health in future, but merely to argue that the overall impact of such illness and disease can be minimised through better population management initiatives resulting in morbidity compression. This approach suggests that appropriate lifestyle choices and support for patients, such as self-management strategies, can have a positive impact on health outcomes [172] and cost of service provision by decreasing cumulative disability by a factor of up to 2, postponing disability by up to 8 years and compressing morbidity into a shorter period toward the end of life [173].
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“The variable which had the greatest inhibitory effect on the growth of healthcare costs was the percentage of patients receiving guidance for improvement of lifestyle-related factors.” [165, p231]
Such approaches have the capability of reducing the demand for and cost of acute care services and to reduce, therefore, the overall burden of health care in communities. This view argues for a shift in priority from acute care services and the un-coordinated management of end-point illness to a much more preventive, early intervention approach to managing overall population health and provision of health services to our populations according to scientific evidence and principles [159]. Canada‟s health minister (Allan Rock) recently flagged his intention to embrace a new effort in primary and preventive health care as a way of managing demand and improving outcomes for the community. He highlighted the main elements of population health along with the need to improve the wellbeing of whole communities rather than concentrating on individual illness. “In general, population health is a concept in which the emphasis is on the health of the entire population, not the health of the individual. The accent, therefore, is on health improvement via health promotion, not by the provision of acute or individual care alone. Many doctors disagree with the concept, since they treat patients – and their problems – individually. [174, p789]
Dunn and Hayes suggest… “Population health refers to the health of a population as measured by health status indicators and as influenced by social, economic and physical environments, personal health practices, individual capacity and coping skills, human biology, early childhood development and health services.” [175, p7]
Nancy Edwards thinks of population health as an evolutionary stage from interventions targeting lifestyle change and health promotion as a solution to the burden of disease. She sees population health approaches as strategies to understand and redress inequities in health and wellbeing across communities through focusing on causal links between determinants of health rather than determinants of disease. “Building on the experience and knowledge gained from lifestyle and health promotion efforts, population health focuses our attention to inequalities in health status and their determinants. As we enter the new millennium, a major challenge facing those who design, manage and implement public health programmes will be finding the means to effectively tackle determinants and their interactions.” [176, p10]
Professor Bob Douglas summarised the trend towards larger population views of health and wellbeing when he wrote, “Most of us in the medical profession derive our views of health and illness from the reductionist model in which we were trained, which views human beings as complex machines (ref Capra). Understand the operation of the machine at the biomolecular level, and you can best determine how to fix it when it goes wrong. Modern technology, pharmacology
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Peter William Harvey and vaccinology have enabled use to become more and more precise about which parts of the machine to oil or medicate – when and how.
Generally, we have paid lip service to the view that humans are social beings and an integral part of a complex ecosystem that conforms to the principles of system theory and chaos theory. But it has been largely lip service, and the „man as the machine‟ paradigm still rules supreme in out medical psyche. Now, however, we are being forced to look more seriously at the social and environmental determinants of health, as increasingly we recognise that system factors set the thermostat for the operation of the machine. Social and environmental factors are all pervasive in their impact on health. They influence the entire spectrum of health and illness and although we are not sure of the causal pathways whereby they alter immunology and endocrine function, there are consistent patterns of health disadvantage that go with socioeconomic status, education, occupational prestige and the lived environment. Fixing a sick environment is probably more important in the long run for sick individuals than a focus on the sickness itself. Doctors are now beginning to understand this, and to recognise the need for population-wide strategies that can change the collective thermostat. But the craft is still in its infancy.” [177, p13-17] Further, “Ideally, there should be a way of bringing together different measures of health to form a composite index but this has not, as yet, been achieved” [178, p12]. Such a composite approach may be even counterproductive (WHO – Health Services Delivery, July 2000, [179, p447]. To be truly effective health outcome measures and indicators need to encompass more than illness factors or service utilization trends; we need to develop indictors of health as well as illness [180, p1] and pay attention to the social and spiritual dimensions of health [181, p122], [182, p360]. Indications of the overall health and wellbeing of whole communities and populations can be derived from many factors in our social and community structures other than morbidity, and other end-point outcomes currently being collected and analyzed for trends and meaning. Edwards sees that the real challenge ahead for emerging approaches to population health is to determine how to use the evidence about determinants and their interactions to guide development of the next generation of public health programmes [176, p11]. That is, how to understand more subtly the cause and effect relationships involved in the creation of health and wellbeing and to use this information to redress some of the glaring inequities in outcomes of our systems at both the individual and population levels. Or, according to Levy, our focus should be on more detailed descriptive data about the material conditions of life upon which our overall wellbeing is predicated. “Data descriptive of housing conditions, diet, education and the quality of family, working and social life are thus probably the data which express the health level, or at least explain the health status, most effectively.” [179, p453]
What is needed is a multi-factorial model of outcome and wellbeing based on measures of wellbeing of the whole population (society and environment) as a determinant of individual wellbeing. However, as demonstrated in a range of WHO publications on population health outcome indictors [183, 988], this task is highly complex and involves many subjective community values being reduced to a single outcome factor. Such reductionism may be practically impossible, even though highly desirable and to this are the
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compounding genetic factors that can be linked to social and environmental factors to complicate risk prediction. “The vast majority of illnesses in humans are multi-factorial, a result of complex interactions between genetic constitution and such things as how individuals are nurtured, what they eat, whether they smoke and the way in which they live. (That is,) the determinants of most diseases are complex, highly interrelated, and embedded in a social context.” [184, p408]
Even though these broader views of population health present challenges for researchers, it is clear that many of the surrogates for health and wellbeing used currently, are really of limited value both as indicators of overall wellbeing or as predictors of health outcomes for populations now in their formative years. Such measures as morbidity or life expectancy bear no real resemblance to the changing contexts and parameters under which younger generations live currently. In fact, much of the lifestyle disease that will afflict new generations is totally different from the conditions upon which the projected longevity of older generations is based. With reference to standard logical positivist health promotion, research and evaluation, there is growing concern that such approaches are no longer asking the right questions or finding the right answers for many of the new health promotion interventions [185, p9]. Our application of health outcome indicators is in a constant state of evolution, as we attempt to grapple with new concerns in the health arena [186, p11]. “So, in reality, life expectancy tells us a lot about those who die, but tells us nothing about the living. And of course, the basic premise is false, because we will not experience the same life circumstances as those who are dying, on average, in their mid-70s today.” [187, p69]
Also, Wolfson notes that, “The most common health measures are actually based on death status – infant mortality and life expectancy. There is very little measurement of health status and function while people are alive (and) life expectancy estimates are insensitive to the health status of the population. They provide no indication of the quality of life, only the quantity” [188, p41]
Similarly, many of the reports and indictors used in the health system to measure effectiveness of service provision, gauge patient outcomes and the impact of policy and practice upon communities are also anachronistic and practically useless. In South Australia, for example, standard monthly activity reports in hospitals tell us nothing about why there may be changes in trends; they merely tell us that such trends are occurring. Often there are numerous and complex reasons why admission rates change or why revenue rates differ from month to month. Casemix systems and other supply side approaches to service provision and demand management define the rules for resource allocation. These rules run a system that is not responsive or flexible enough to adjust to changes in demand while the system goes ahead inexorably, irrespective of the outcomes of reporting schedules. Much of the statistical „data‟ generated across health systems is fabricated by unit-based practitioners who report what they expect the larger system wants to hear and none of this information really measures the impact of service delivery upon the population. It is merely a
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system requirement that creates a sham of financial accountability. Health administrators know that the bottom line is the financial statement and not community outcomes, so it is this statement that drives the so-called data reporting process. In reality, especially in rural communities, it makes not a jot of difference whether funds are allocated according to Casemix or not. It would do equally well to allocate resources according to a population based formula or a bottom line amount in a consolidated financial statement and leave it to the finance people to balance the spreadsheet by manipulating the formulae in the body of it. What is the point of reporting on DRGs or bed days or length of stay as indicators of health outcomes if we know that DRG data is manipulated to maximise returns to hospitals or that bed days are really pre-determined by bench-mark loadings? These figures are no surrogate at all for health outcomes or community wellbeing. They are simply the result of self-fulfilling prophecy rules for how finances and resources are to be used in the health system. So how do we get beyond such sophistry to arrive at a real measure of what is being achieved in terms of health outcomes at the population level? This is leaving aside the cynical view that the existing system is really creating a false body of information because to measure what is really happening, who has received the benefit of resources and who has not, could be far too demanding. It is all far too hard; a state referred to as „macro avoidance‟[168, p63] and a state that seems only marginally less destructive than „micro paralysis‟ when the generation of endless detail begins to obscure clarity of thought and limit action also. Even though the task of defining and measuring wider population outcomes in health promoting environments is an extremely challenging one, Holman suggests that it is important that we develop systems to measure and analyse population health determinants as we have done in more specific disease and illness based epidemiological research. “However, without a well-developed yardstick, without measures and measurements, the health-promoting environment is in danger of remaining what the skeptics will see as an illdefined, nebulous, opinionated and perhaps even divisive concept, one that is long on rhetoric and short on fact.” [182, p364]
Fox also warns that vested interest groups concerned about the erosion of their resource base in medical practice and in academia will oppose the establishment of Population Health initiatives. Apart from a lack of evidence that such approaches achieve specific outcomes any better than existing systems of care, our pressing demand in the disease management areas, and the difficulties associated with diffused responsibility for health, he claims that people may not want to change voluntarily to population approaches to health at their own expense [189, p7]. Clearly, there are numerous obstacles to the uptake of wider strategies for population health, which suggests that small and local initiatives are more likely to be successful than wholesale system level change approaches [72, 190, p46].
ENVIRONMENTALISM, EDUCATION AND HEALTH OUTCOMES In this context, it is important to develop indictors of community wellbeing, therefore, that take into consideration the new and emerging social and environmental factors that will define quality of life, life expectancy and health outcomes for the next generations. Increasing
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levels of environmental pollution and poisoning, changes to the quality and nature of our food and changes to the global ecology will all have impacts upon the wellbeing of formative generations [166, p31], not to mention wars, famine and major disease outbreaks! Whilst it is becoming popular to manage or „ration‟ limited health system resources to improve quality of life for populations and it is recognised that the quality of our environment is a predictor of individual wellbeing, we are still unsure as to the overall resource implications of such a shift in priorities for the investment of our finite health resources. It is clear, however, that even with vastly improved systems, human life cannot be prolonged, constructively and qualitatively beyond an average life expectancy of 85 years of age even if we successfully enter Olshansky‟s „age of delayed degenerative disease‟ [170, p131]. Evidence exists now that our current approaches do not actually increase life expectancy or quality of life for people over 85 years of age. The task is to improve quality of life for younger people and to reduce the incidence of preventable illness, which, Fries suggests, is responsible for up to 70% of the overall burden of illness in the community [191, p73]. So what is the net result, in terms of quality of outcomes and resource expenditure, of increasing quality of life for those who are under 85 years of age and of limiting the early mortality that is currently accounting for a large proportion of our sicker individuals? “Traditional mortality-based summary indicators or population health are no longer adequate for low-mortality countries like Australia, where the non-fatal consequences of disease and injury for health and well-being are of similar importance to premature or preventable mortality.” [170, p126] “The world health community has repeatedly endorsed a definition of health which goes beyond the absence of illness and disease and incorporates the concepts of physical, mental, social and spiritual well-being. While there are well-validated indicators of disease, the measure of the impact of disease and of physical, mental, social and spiritual wellbeing as positive constructs has been left almost untouched. Furthermore, as the populationenvironment issues bite, the sustainability of current levels of population health have not adequately been measured or predicted.” [170, p125] “…(a) the mounting scientific evidence that factors that reside outside the health system or health sector influence health, (b) a commitment to educate the public that „health is more than health care‟, (c) the belief that good health outcomes require more than tinkering with the health care system, and (d) a desire not to follow what many considered to be the narrow focus of health goals developed by other jurisdictions.” [192, p41]
WHY POPULATION HEALTH CARE? The Strategic Research Development Committee (SRDC) of the National Health and Medical Research Council (NHMRC) has identified research into systems of care for chronic diseases as a priority area. The SRDC is a principal committee of the NHMRC overseeing the development and implementation of strategic research in areas where the research effort is not commensurate with the magnitude of its importance to health care in Australia. The need for research targeting systems of care for chronic diseases was identified through a consultative process carried out by the SRDC in late 1999. Other priority areas identified through this process are: ageing, mental health, oral health and Indigenous health.
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Chronic diseases can broadly be defined as illnesses that are prolonged, do not resolve spontaneously, and are rarely cured completely. The development of appropriate systems of care for chronic disease sufferers is increasingly becoming a priority because of the following: more than four million Australians suffer from one or more chronic diseases this number is increasing as Australia‟s population is ageing and more people with chronic disease are surviving costs are escalating. Today, chronic diseases predominate among the leading causes of death in most industrialized countries [193] and chronic diseases are recognized as placing an increasing burden of illness upon communities. Traditionally, the management of chronic diseases has been considered in terms of individual diseases. Internationally, however, there is a move away from this paradigm to a wider population health approach to community health and wellbeing. The SRDC believes that the current health care systems in Australia are based on an acute care model that was developed in response to the disease pattern of low life expectancy and high infant mortality caused by infectious disease. Over the last century, developments in public health have led to a decrease in mortality due to infectious disease. There are now increasing numbers of chronic disease sufferers. The SRDC suggests that the health care system has not adapted to these changed circumstances and is certainly not prepared for the imminent double impact of chronic illness in older people at the same time as early onset chronic illness is becoming common also in much younger generations creating two waves of escalating chronic illness to impact the health system together.
DEVELOPMENTS We have seen a range of acute and primary health initiatives in recent times… public programmes to deliver sanitation and water public immunisations programmes disease based programmes to address diseases such as diabetes, heart conditions and so on run through GPs and acute intervention developments in surgery to replace and repair failing systems initiatives in education and training for allied health workers information and public education system to improve consumer approaches to their life decisions chronic disease self-management programmes to improve life options for people with incurable illness; the management of their pain and living options coordinated care programmes to manage earlier onset chronic illness research based programmes in genetic manipulation of faulty genes to reduce the risk of long term illness
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social engineering programmes to overcome debilitating effects of poverty, unemployment and lack of education redistribution of wealth through government intervention to relieve the impact of poverty and social class divides Following work with the coordinated care process [9, 37, 194] and attempts to manage chronic illness by shifting resources from the acute sector to the primary care sector it has become apparent that much of this work dealt with acute intervention for patients already suffering the effects of chronic illness. We realised that certain clinical and social approaches to specific illnesses could reduce the impact of those illnesses and diseases and improve life options for sufferers as well as change the balance of funding between acute and primary care systems [15, Chpt 2]. However, this work still dealt with specific illness groups and failed to address whole population health from a perspective of building health and measuring wellbeing per se. A Population health management process is necessary if the total resource pool for a community, state or country is to be managed effectively to improve health outcomes for all whilst controlling the escalation of episodes of acute intervention. One simple and now selfevident approach to early intervention and prevention, for example, would be improving the level and quality of family support for young people [157]. As Lewis also points out, “As it turns out, intervening very early in life with good nutrition, nurturing and stimulation is immensely more cost-effective than rehabilitating the lives of those with imperfectly connected neurons who were socialised early into a culture of failure.” [167, p66]
In short, the ideological position is simple. The cost to the well-off and financially viable members of the community of continuing to create poverty and deprivation will ultimately be more than their resources can afford. It is much better to support people to be functional and intelligent consumers of commodities in society than to oppress them into becoming dependent consumers of health services that they would not need to consume at all if educated and assimilated properly.
WHAT ARE THE KEY ELEMENTS OF PHC? funding streams and community services are aligned and coordinated to ensure that contributing services and community efforts work together and not against each other resources are invested in early intervention, information, education and life-style improvement programmes there is a resource substitution from acute to primary care programmes over time social, economic, education and employment are all factors contributing to community health and wellbeing and should therefore be part of the health service or system equation and not just „after the fact‟ intervention processes outcome targets are refined across the health system to include these broad wellbeing indicators rather than just hospital admissions and MBS utilisation
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WHY HAS PHC EMERGED NOW? Work to date needs to be validated through formal research and outcome processes with outcomes achieved through coordinated intervention strategies documented and acknowledged to authenticate changes to effective best practice. In the Eyre Region pf South Australia for example, new Commonwealth Regional Health Services (CRHS) and integrated care structures are being used to implement and assess new service provision arrangements and to develop new population health outcome indictors for future reference and adoption across the system. The social and political implications of a population health approach are that the total resource for a wide range of services and supports that contribute to community health and wellbeing is averaged across the whole population thus reducing unnecessary spending in areas where clear outcome benefits are not demonstrated. Similarly, additional resources can be directed to other areas of intervention and support where major outcomes can be demonstrated. As Callahan [10] notes, this will imply a shift from costly surgical interventions that benefit the few to broad based interventions that benefit the many. The underlying thesis in all of this is that much of what manifests within the health system as illness and health crises can be prevented, avoided, mitigated or reduced through social and community interventions such as education and primary health care programmes. To date the missing element, and recognition of this element has been compounded by recent trends in economic rationalist models, has been cognizance of the fact that at the root of our health system lie social and economic determinants of community health and wellbeing. Of course we will always have acute needs; accidents; genetic and systemic failure and environmentally induced illness, but the point is to reduce the impact of these factors through recognition of economic and environmental factors in the health and wellbeing equation. What we need to be able to show is that a social structure freed from the checks and balances of social and economic inequity can produce better health and community wellbeing outcomes than our current reactive health care system. Is a system that evens out the differences between social classes and economic wealth capable of delivering better population health and wellbeing for the whole community? Baum suggests that this thesis is already well explicated as evidence exists that communities characterised by great disparities in wealth and access to resources have poorer health outcomes generally [11, p420]. There is also much evidence to suggest that a significant proportion of the disease burden in society can be directly attributed to socioeconomic disadvantage [180, p78]. Ultimately, if the environmental and social precursors of poor health are not controlled and managed for major improvement, we will experience in human health care the equivalent of the current disease and health problems in the animal industry. That is, poorly managed environmental and economic elements of human social existence will begin to produce a new era of infectious disease and lifestyle related disease [165, p229] that will burden our communities. If the social, economic and environmental factors are managed for sustainable and healthy communities, the impact of these potentially catastrophic outbreaks will be
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reduced for the benefit of all. Alternatively, if such intervention and management is not pursued, the cost of maintaining healthy communities will escalate further and action will remain perpetually in the reactionary arena with all of our resources going into managing outbreaks of environmentally and socially induced ill-health.
TOWARDS NEW POPULATION HEALTH ORGANISATIONS Following the coordinated care trials in Australia (1997-2000) the Eyre Region in South Australia conceived of an integrated health care system based on the collaboration developed between GPs, allied health services and health service providers that would integrate and coordinate preventive primary health care services. Since this trial other initiatives have progressed (Enhanced Primary Care (EPC) and CRHS concepts), but the key element of integrating whole population resources to work for improved health outcomes appears to have been lost. Such integrated care, dubbed the Eyre Coordinated Care Organisation, was based on the organisational model developed for the COAG trial. This Regional Demonstration Unit (RDU) linked into one management group all of the key health service providers and their hitherto disparate pools of resources, to achieve the whole of population health targets established by the recently formed Department of Human Services. The new department structure made it theoretically possible to pool resources and for organisations to collaborate across the previously separate sectors of Health, Housing and Family and Youth Services. All the key departmental sectors could, theoretically, coordinate their efforts to improve whole population wellbeing and not just deal with crises in the isolation of their departmental silos. Initially the Eyre coordinated care programme focused on managing patients with chronic illness in order to reduce unnecessary hospital admissions and to shift resources from the hospital sector to the primary or preventive sector. However, such processes could also be used for managing health and not just illness. The coordinated care model, based on prevention, early intervention, targeted support and best practice protocols in its more extensive form, could become an instrument of whole population health maintenance. The main shortfall in the logic being that resources shifted to whole population care had to be cost-effective and had, essentially, to be substituted from the acute sector. That is, any buildup of population health initiatives would be at the expense of acute care, crisis care and illness management. In essence, the objective of the model proposed following the first round coordinated care trials was to achieve Regional reform by using the Coordinated Care strategy to support ongoing organisational change. This is the outcome for which the Coordinated Care Trial strategy had been working over the past three years [71], although, the conditions may not yet be favourable to achieve such major changes.
THE PROPOSAL SUGGESTED… The Region will seek to pool DHS, MBS & PBS funding and manage these resources locally in a more integrated manner to achieve an outcome-funded health system. This will also involve the aligning of new funding incentives and initiatives across the Region to ensure
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that additional resources such as Coordinated Care Trial funding, GP IT system funding, rural initiative funds and Aboriginal health resources are also coordinated at the Regional level. GPs would be encouraged to participate in this scheme by pooling their historical MBS funding allocation (loaded according to National averages for utilisation of this stream of funds) whilst others might choose to work with the existing schedule of fees. Arrangements would need to be made with the current co-payment component of GP income for treating and managing patients. New initiatives such as the aged care plan proposal could be included in the funding pool and managed as part of a wider coordination strategy. GPs would coordinate teams of Service Coordinators who would coordinate service provision. Service Coordinators would be funded from the Regional pool, either directly or indirectly, by being employed by GPs at the surgery level. Improved coordination of services would reduce acute sector utilisation, MBS and possibly PBS costs and enable resources to be permanently shifted from these sources to the primary sector to extend preventive services and fund early intervention and prevention programmes across the Region. A new collaborative Regional Management team (ERHS, Division, Community Health & Providers) based on the Regional SA HealthPlus Model (RDU) was to be developed to manage Regional priorities and allocate resources to achieve specified health outcomes across the Region. Rural communities, perhaps more than other mainstream communities, are feeling the impact of social and economic change. One of the key elements of this change in relation to health care in particular is the ideological change or paradigm change around how health services are being promoted and provided in these communities. Traditionally rural communities were viable economic units able to produce vast resources for the state and to contribute in excess of their own needs to the wellbeing and prosperity of the whole nation. As profitability reduced, costs escalated and prices fell, many rural enterprises no longer had even a semblance of a claim to economic viability. The cost of running the production units in many rural communities far outweighed the returns from these units, and this is to say nothing of the environmental costs associated with their continued operation [125, p372]. In such an environment, communities no longer have the economic or political power to demand, as they have in the past, a „fair share‟ of the national infrastructure spending. Consequently fewer and fewer public services are available in remote communities to mitigate against rising rates of acute and chronic illness. At the same time, however, resources to fund and maintain end point clinical and acute care services are being reduced and the cost of what services that do exist are being shifted increasingly to individuals [160, p931] systems scramble to reduce their costs. So in the ideological shift to population health, along with the recognition of the importance of environmental and social factors in community and individual health and wellbeing, rural communities may be disadvantaged. They could lose their traditional acute service base whilst they are struggling to develop an alternative primary health care approach to offset or compensate for these ideological changes [73]. Population health care is a sound and long-overdue idea through which communities and individuals generally could achieve major advances in health and wellbeing. It does, however, have potential to further impoverish some rural communities and to contribute to the general exodus from these communities by those in favour of lifestyles in larger centres. An
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important consideration in the development of population health strategies and outcome indicators is the degree of compensation that will be required to ensure such approaches work well in rural communities as well as in larger communities and population centres. Inevitably such approaches will require resource allocations to be skewed to support isolated and sparsely populated communities where the usual efficiencies due to economies of scale do not apply. It may be necessary, for example, to recognize the risks associated with rural lifestyle and to accept that part of the cost of making life safe and healthy from a population perspective includes the cost of environmental protection and reconstruction and development of sustainable enterprises in rural communities. If these costs are not met, from a population health perspective, life in rural communities will continue to contribute to higher than acceptable incidences of preventable diseases, lifestyle linked illness and accidental injury.
Chapter 11
A CURRICULUM FRAMEWORK FOR LEARNING ABOUT SELF-MANAGEMENT To date, ideas about chronic disease self-management and prevention have generally impacted on health professionals in their daily practice and through health systems reform programmes. It takes time for this kind of thinking to enter the undergraduate world and take its place in core curricular in schools of health and medicine. Indeed, many of the concepts being explored around self-management today have their roots in other disciplines such as philosophy, politics and social sciences. Links being explored between our macro environment and the health and wellbeing of individuals are enabling us to see the potential for building a health creating system rather than just an illness management or treatment based system. However, it is now time to begin moving such concepts more actively into the mainstream schools of thought and for teaching emerging health professionals about a wider concept of environmental health and well being rather than them concentrating on working solely with people who have existing health problems. Some areas of exploration and teaching with direct implications for the larger concept of self-management and human empowerment in health are briefly outlined below. 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13.
Ideology and health care provision; Power politics and the creating of a wellness culture; More than just teaching about sickness and cure; A new model for training health professionals; The collaborative / team oriented model of care; Investment in lifestyle education and prevention; Teaching health professionals about social theory and politics; Towards a wider awareness of corruption in health care industry; The private health insurance system and how it works; Science, evidence and experimentation in health systems; The myth of the randomised controlled trial and the real world; Health care, the business; Longitudinal analysis and random effects modelling…a more naturalistic approach to research.
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HEALTH RESEARCH, SCIENCE AND THE HIDDEN CURRICULUM There is an old saying that when people go out fishing, it isn‟t really fish they are after. Similarly, when I go, religiously, every Sunday morning to collect my fresh vegetables from the farmers‟ market, it is not necessarily only vegetables that I seek. There is often a less apparent motive in our actions than the most blatantly obvious one. Similarly, with the business of research in health science, for example, much of the time the declared objectives of our studies are not the main game. In 15 years of working in research in this field, I have rarely seen a scientific discovery uncover something new; something that isn‟t just a re-run or variation on work already demonstrated in the field. Most studies, projects and programmes are about proving again, or confirming something that is already known; HbA1c cut-off levels and correlations with hospital admissions for diabetes complications, exercise and diet programmes and changes in metabolic fitness…of course there will be significant changes in the overall metabolic fitness of a cohort if they are subjected to additional exercise and dietary modifications just as a starving person will be sure to lose weight. However pedestrian this process might be, the tendency for us to dredge up the old chestnuts may actually be a function of the way we teach or promote examples of good research or the way researchers need to behave in order to receive competitive research funding. That is, we need to be working within an accepted paradigm or in an acknowledged area of endeavour and essentially be in the business of refining knowledge in that area or field of research in order to receive recognition. Studies show too that Aboriginal people who are able to control their blood sugar levels with metformin improve their diabetes symptoms, gamblers attending treatment for their addiction show reductions in their gambling, people who run 25km each week have lower blood pressure than those who sit on the couch and, I‟m sure (the hawthorne effect taken into account) we could even show that after controlling for social and income variables, people who live in houses with stairs to different levels of their home have better cardiovascular fitness than those who live in single level homes. So what are we trying to prove with all of these so called scientific studies in the numerous fields of endeavour? What is the point beyond the obvious that we are missing? Should we be channelling our work more into implementation research to ensure that the things we know to be effective are actually implemented rather than spending our time duplicating or working out minor permutations or iterations of an already familiar phenomenon?
THE PHILOSOPHY OF SCIENCE RE-VISITED The evolution of objective science is a continuous process and we are constantly changing and refining our concepts of matter, time and space to encompass the quantum physics of people like Rutherford, de Broglie, Heisenberg, Einstein, Hawking and others [195-198]. Underlying all of this effort and progress in science is the idea of open, inductive and critical logic based on the principles of verifiability and refutation [199-201]. The very foundation of modern society, Popper argued, was the idea of the scientific paradigm as
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characterized in his major work, the „Open Society and its Enemies‟ [200]. Ideas, principles and knowledge forms had to be repeatedly put to the test to find if there were any circumstance in which they could be refuted and rejected as inadequate theories. When it comes to health and matters medical, this dominant scientific paradigm is very powerful and very difficult to challenge. An enormous evidence base around medical treatment and outcomes now exists. Theories are rigorously tested using repeated, quasiexperimental research models that are based on sound mathematical principles. We know the causes and course of disease and we know which treatments work best under which conditions and over time we have learnt how to refine such approaches in order to become better and better at the business of health science. In short, we know how to do science. A further example of how our methods may lead to confusion among devotees of the processes of science as well as to relative new-comers to this thinking is the way we study, analyze and attempt to improve the health status of „at risk‟ populations. Does our scientific approach to human metabolic fitness, as a case in point, take into account all inputs around the metabolic processes occurring in the body or only focus on and measure certain levels and types of food and energy inputs against levels of exercise and activity outputs? [104] Does the modern physiological approach to metabolic fitness take proper account of the importance of psychological factors or genetic factors when deciding what one should eat or how they should best manage their lifestyle to maximize their health and wellbeing? The same question might well be posed in relation to the application of standard science to improving the health status of Indigenous communities. Does our particular and well researched approach to knowing and being in the world adequately connect with and inform Indigenous realities in a way that enables people to take control of their lives and use new information and knowledge to improve their health? What other factors might we be ignoring in our models? Some suggests that understanding the so called science of illness management is really secondary to more fundamental elements such as physical and emotional security and the ability of people to belong within communities and feel valued and respected in their culture. People also need to have control over and know they are in charge of the basic aspects of their day to day lives [202, p218]. This is not only the case for Indigenous communities! The findings of the Whitehall study in England highlighted a clear connection between health status and the degree of autonomy or control, or lack of it, that public servants have over their work situation [91-93, 95, 157]. Even well paid and highly educated public servants were becoming ill at alarming rates, suggesting that economic factors alone could not explain trends in health status generally. „If you are expending effort and the reward for this - whether in the form of income, selfesteem or status – is inadequate compared with the effort expended, then that imbalance between effort and reward is bad for you. People who report high effort and low reward have higher coronary heart disease incidence than those with low effort and high reward, even when you adjust for low control.‟ [157, p137]
Although there may be questions about the overall effectiveness of the scientific paradigm, it appears to be more encompassing and successful in its description and categorization of reality than other historical paradigms. It is more successful epistemologically and therefore dominating of other worldviews that may not have such replicable and far-reaching powers of predicting and describing. We no longer believe that
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people die because of evil spirits, but look in our water, food and air for the contaminants and microbes causing such problems and we no longer believe that we suffer because God is angry with us (although on another level this may be true!), but rather because the powers of nature are greater than ours or because we have created, though our own actions, some of the very famines or wars that continue to oppress us. The scientific paradigm has come to dominate our lives, our thinking, our technology and our very being in the world. As Heidegger wrote… „The power concealed in modern technology determines the relation of man to that which exists. It rules the whole earth.‟[203, p50]
We trust science to fly us around the world, to cure our infections, build our bridges and modern buildings, to shape and re-shape our environment, change the course of rivers and even of history itself and to unlock the binding energy of matter for our personal use. Even though we do not fully understand what matter or energy; the foundation of our being, really is because even the best science works only with approximations of reality rather than with absolute truth [204, p 40], we do know how to work with our models of matter and energy to build technologies that function for our benefit. But in this headlong race to encompass, describe, understand and control every facet of our lives through scientific research and technology, what are we losing? What other ways are there of seeing and understanding, contributing to and inform our cultures meaningfully [205]?
THE HIDDEN CURRICULUM IN HEALTH As a student of Education systems, philosophy and science, I was impressed in the seventies by the concept of the hidden curriculum in schools [206]. This was a simple thesis; that whatever is done in schools, from the way the class groups are constructed or streamed to the way time intervals are measured off and signalled implies a training or learning outcome that goes beyond or beneath the more obvious intention of these activities. In short, schools are designed to re-produce, through a range of subtle and not-so-subtle devices, a certain social structure and ideological norm. In schools, the subjects; curriculum content studied are the chess pieces in the process of building such a social structure. The agenda is to sort, stratify and control society, not to liberate and free individuals to be flexible thinkers and actors on the stage of society. An example of this process is how Aboriginal people, for example, have been systematically excluded from the mainstream society through the avenue of education [207]. We teach mathematics, science and literature, but it means different things to people who are able to apply what they learn in different ways and the overall outcome is always the same; those with money and power always end up controlling or owning the processes of power distribution while those without these leading edge advantages generally end up being controlled by them. Those who succeed in schools are pre-determined by the conditions that they bring to the system and which match the ethos of the institutions in which they strive. They become the bell ringers, time measurers and controllers while the others will leave the schools to spend the rest of their lives being ruled by the bells that they have learned to obey like robots in schools.
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Now this is an interesting concept and one I have had occasion to revisit regularly in my work in health science. I have often reflected on some of the major programmes into which I have poured my hours, days and years; wondered, apart from the obvious benefit of this work to myself and my family, what it might really be achieving? On reflection, few of the major projects of my career have really been about what they were promoted, ostensibly, to be. Mostly, they were about politics and change initiatives, not about science, research or multiple regression analyses. Simply, in the vast majority of cases, our work, our science, is the handmaiden of business organisation.
SO WHAT? The real question in all of this is, if most of our so called research is not good research in the pure sense and is mainly being used as a political driver for rather sluggish systems change, what kind of research should we really be doing in health science in order to move things along more quickly? Should we, for example, be spending more time studying the phenomenon of research as a change driver and then working out how best to implement effective practices rather than proving simple truths over and over again or training research scientist in methods that are fundamentally flawed? Should our research be more about the study of implementation strategies, finding out about what approaches to change work best (including the old chestnut of doing research as a way of trying to change something) [71] or the best ways to put into practice what we know to be the case rather than concentrating on ever more refined ways of showing what we already know to be the case [54]. In short, a new methodology focusing on implementation research would complement the work already done identifying health related factors; factors that are now accepted unequivocally: smoking is bad for your health, moderate exercise, a complex, low fat, low salt diet is advantageous to health, wearing seat belts saves lives, better roads improve road safety, improved vehicle design and safety fixtures reduce injuries, smoking marijuana leads to psychotic episodes, ingesting psycho-active drugs can be addictive and deleterious to health, poor housing and low income levels equate to poorer health, pesticide residues in our food cause cancer, too much meat in our diet causes bowel cancer, over-exposure to ultraviolet radiation causes skin cancer, not enough sunlight exposure leads to low levels of vitamin D, lower levels of vitamin D means lower bone density, stomach ulcers are caused by bacteria, many cancers are the result of infections. These are a few things we now know and yet we still have not studied the best ways to implement behaviour change around preventing such health risk factors. What, for example,
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is the best way to prevent farmers from poisoning themselves and their families with dangerous agricultural chemicals? How can we reduce the impact of this phenomenon on long term health problems like increased allergy rates and learning difficulties in children in rural communities who are exposed to abnormally high levels of dangerous chemicals? How do we actually get more people access to better education and better incomes so they don‟t end up living in poor housing, eating poor quality food and getting sicker than other people who have access to better levels of resources in their lives? Can we work out a better way, for example, to distribute our wealth so that the economic determinants of health can be taken out of the poor health status equation? Are we really interested in doing so? In developing a curriculum for inculcating improved lifestyle choices for the health care consumer and self-manager and for introducing such concepts into the mainstream curricula of schools and universities we will need to remain cognizant of how curriculum structures operate and how best to get the message across to future consumers and providers of health care. For example, if our surface curriculum teaches about population health and early intervention and prevention approaches to managing chronic illness; that is, the subjects are in the curriculum, but graduating practitioners and health care consumers are unable to actually implement such approaches, the hidden health care curriculum is still dominating behaviour. If we receive the messages, but are unable to act upon them because of archaic structures in the health system (ie structures that prevent effective patient/provider communication or collaboration) or because we choose not to act upon them, a more powerful message is being delivered through our education, training and social systems. The message of dependence on the system and abrogation of personal responsibility wins out if our behaviour does not respond to or match what we know we should be doing. If the clinic structures or insurance payment systems prevent the GP spending adequate time with their patients to put in place a comprehensive health care management plan then the deeper system level structures of health drive our behaviour rather than our knowledge of what is best for patient care. If time constraints and work pressures mean that every second night we buy fast foods for our family instead of cooking healthy meals and taking more time to relax and enjoy home life then our health-related behaviour is being driven by factors contrary to what we know to be best for us. Our behaviour is being constructed by the business of fast food provision in response to too many people with too little time or inclination to help themselves by making sure that they actually eat reasonably healthy foods. These are the more subtle messages that prevail in our society today; that we are superficially aware of the determinants of health, but that it is not really our individual problem or that our health will have to wait until the other important business of life has time for health. The health system or the government or someone else must then deal with the problems that result from such a life strategy; the illness, the stress related social and emotional problems or the obesity resulting from sedentary living and over-consuming of low nutrition diets. Further, the implication is that we, as consumers of health related substances and behaviours, can carry on our consumption of this and that with abandon and when problems occur, there will always be a health care specialist to solve our problems for us. The self-management message is contrary to this status quo position. There will not always be a practitioner available to investigate, medicate or operated to fix our problem so we must, as far as is possible, help ourselves with the things that we have the ability to control and manage. This new curriculum for self-management is a political and social curriculum as much as it is a health or medical curriculum. The message is simple; the illness
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profile of over-consuming and under-active humans is changing in a way that the end point physician or doctor can not always manage. Indeed, it is the consumer as much as the practitioner that needs to learn these new management techniques for health. The partnership between the consumer and the practitioner has never been more fundamentally important to population health than it is today because much of the illness we currently experience in western society is created by the way we live and can not necessarily be cured or even treated by health care practitioners working in the old model of acute care management. We all need to learn how to become better care managers in partnership with each other, more equal in the process and less dependent upon experts that we rely upon to save us from ourselves.
Chapter 12
ENVIRONMENTAL HEALTH AND THE SELF-MANAGEMENT DILEMMA What does climate change have to do with population health and preventative health care programmes in Australia? How is this macro view of our planet‟s health linked to the micro world of population and individual health and wellbeing? Apart from the obvious answer that drastic climate change could destroy us all, even minor changes to our planet‟s climate could have dramatic impacts upon the overall ability of individuals and communities to sustain their health and wellbeing at current levels. The availability of clean water and safe food will ultimately determine the social and economic structures upon which our daily lives are constructed [125, 126, 155, 208]. As history has it, the social and economic conditions of human existence determine our existence [24, 25, 93, 101, 130, 209]. For modern society, the overwhelming material and economic determinant of existence is climate stability, or instability. What will this mean for the daily lives and health status of the world‟s population? Health Science today is behaving like a peasant farming culture focussing on the intricate structure of their planting while not being aware that the river upon which their plants depend is about to stop flowing. They need to look to the bigger picture in order to secure water and nutrients to sustain the plants they place so lovingly and clinically in such straight rows. A new health science paradigm would focus on sustaining the essence of healthy life and not just on re-proving old theories in epidemiology; showing how much illness exists and plotting neat curves to compare populations over contexts and time. What the Earth‟s population is crying out for is healthy air and water and a safe place in which to nurture it young, naturally. If we can not guarantee these fundamentals for future generations, we will have made a sad mockery of our concepts of population health by not being cognizant of the most fundamental of all population health determinants, the essential material conditions of our very existence [117, 123, 124]. In such a situation, our efforts to manage the wellbeing of populations will be lost because we will have lost control of the fundamentals. There will be no point then in talking about subtle concepts such as social determinants, managing depression or dealing with obesity, metabolic syndrome, diabetes, heart disease and other socially determined ills in order to improve our overall health status. It will be too late for all of this if the very rivers we depend upon for our basic security cease to exist. There are many factors contributing to the wider environmental health of the planet that in turn directly affect the health of individuals and communities across the face of the earth.
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Fundamental to this dynamic relationship between earth health and the health of life on earth is the concept of environmental sustainability; can the production of our livelihood be achieved without killing the goose that lays the golden egg? In short, can we continue to impact upon the earth to the extent that we do while still continuing to live and prosper or must we make some fundamental changes to the living dynamic of the planet as outlined by Lovelock and others [121, 210, 211]? Are we to continue to compete for and exploit the resources of the planet until we reach an environmental crisis (like global warming, international warfare, failure of food production systems of even failure of biological systems), or do we, as suggested by Frances Moore Lappe, need to change everything about our lives on earth, starting with what we eat [131]? Others also argue that the sustainability crisis we face is not just an environmental one, but an ethical and moral crisis that requires nothing less than whole populations changing their expectations of life, of how they live, eat and relax and how they view themselves in relation to the other species on the planet [4]. When dealing with things as fundamental as what we eat and how this affects our health, it is becoming clear that much of our modern food production system is not only morally bankrupt, but poisonous to and dangerous for us. Intensively farmed animals, for example (sheep, pigs, chickens, cattle and fish) that underpin our current food supply are no longer produced in natural environments, are treated abominably in the process and feed on foods that enhance their growth while protecting them from deadly diseases that flourish in such crowed and inhospitable environments. All of this not only has an effect on our environment and the sustainability of our food production, but a direct effect on our own health and wellbeing as we increase our consumption of artificial and chemically enhanced cheap foods in order to continue to live the way we do; artificially [117, p112]. Some claim that if we didn‟t produce food like this we would not be able to sustain life on earth as we know it (over 95% of US meat production is now conducted in „factory farms) [117, p109], but what is the long-term cost of this mass-production system? Can it be sustained? „According to the UN, the livestock sector is responsible for 18 percent of greenhouse gas emissions, around 40% more than the entire transport sector – cars, trucks, planes, trains and ships combined. Animal agriculture is responsible for 37% of anthropogenic methane, which offers twenty three times the global warming potential (GWP) of CO2 as well as 65% of anthropogenic nitrous oxide with provides as staggering 296 times the GWP of CO2. The most current data even quantifies the role of diet: omnivores contribute seven times the volume of greenhouse gases that vegans do [117, p58]‟.
Further, the argument goes, the forced production of food in factory farming operations around the world is contributing directly to disease and population health risk. „the demand for animal products leads to changes in farming practices. Lest we have any confusion about the „changes‟ that are relevant, poultry factory farms are singled out‟ [117, p142].
That is, the way we produce our food actually contributes to our failing health; our illness profile. In order to keep the population of the earth alive, we are adopting production processes that contribute to illness…a kind of modern day, but global Faustian bargain [212].
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This bargain, however, is not only contributing to higher levels of illness in populations, but is also creating the potential for massive pandemics across the globe as new virus strains move between animals and humans. Is the cheap, food-like material we increasingly consume, really worth such levels of risk? These potential catastrophic risks pale into insignificance, though, when we consider the relationship between major killers in the modern world (heart disease, cancer and stroke) and the consumption of un-healthy mass produced foods that have high levels of chemical additives from the primary production phase and even more harmful preservatives, salts and sugars from the secondary processing phase [117, p143].
MACRO AND MICRO SYSTEMS FOR SUSTAINABLE HEALTH The preceding discussion highlights how our macro-economic mechanisms contribute to health risks in the modern world. The current dilemma associated with the competing interests of the need for good population health and the seeming imperative for economic development see us caught between having to produce unhealthy food to sustain our current populations as well as providing for what appears to be an insatiable appetite for economic growth. At a more local level, world economic trends are affecting the way we live, eat, work and consume. Increasingly consumers are being pressured to adopt lifestyle practices that are clearly detrimental to our wellbeing. The business of health care appears to, symbiotically, exist in this dialectic; growing fat and productive off the back of the increasing levels of illness and chronic disease that results from the way we produce and live in our economy. At the pico-economic level of our being, individuals are increasingly being oppressed by high pressure life-styles, increasing economic demands on families and our inability to obtain and maintain sustainable access to high quality nutrition. Instead of living on healthy foods in a low-key sustainable environment, we are increasingly being pushed into live high-pressure lives fuelled by artificial foods, stress, drugs and other forms of distraction that somehow help to make this quagmire for modern life more palatable and acceptable to individuals and their families. The food and impulsive consumption business works like a collective comforter or pacifier; a huge, sloppy dummy stuck in our collective mouths as a sop to both keep us occupied as well as to stopper our mouths against complaints and rational dialogue. [213]. We consume to placate and our consumption and resultant unhealthy lifestyles fuel a health care business that responds to sickness with an ever increasing armoury of costly interventions and treatments that, were we to eat and live more healthily, would not be required at all. But, perhaps such a view of health in modern society; a preventive natural approach to health care is simply far too optimistic a rationale for the future, a view tantamount to the idea that by stopping war we could prevent the loss of millions of lives each year and avoid the destruction, and hence need to rebuild, the world‟s cities, schools, road and infrastructure. Perhaps the business of sickness, like the business of war, is an inherent and necessary component of the human condition that can not be avoided, changed or discarded at the present stage of our evolution.
Chapter 13
EMPOWERMENT AND THE HEALTH CARE CONSUMER An interesting phenomenon emerged during the implementation of self-management programmes for people with chronic and complex conditions in Australia. In the Sharing Health Care initiative not only did we find that patient participation in self-management learning programmes improved their outlook and their health status [41], but that the peer education approach was preferred by many patients to the standard health professional run education programmes around illness management and health care services. We should not be so surprised by this observation, however, as people do respond positively to others who share their own experiences of illness or lifestyle difficulties. People who have themselves learned to manage their illnesses better can become ideal teachers, mentors and facilitators for others in similar situations and their connectedness to the issues surrounding chronic illness is key principal asset in this teaching and learning process. In each group of patients participating in self-management programmes there are likely to be people who see the benefits of this empowerment process and want to participate as peer educators or peer leaders following their own experience as patients of the health care system. Some go on and train to be peer leaders and learn the skills required to work successfully in empowering and educating others in similar situations. These leaders, with their experience of illness management and of being a patient in a group to draw upon, learn to pass on specific skills such as… group facilitation and programme management, goal setting, action planning and reviewing action plans, managing pain, working with people with depression, implementing exercise programmes relevant to the needs and ability of their group members. Through these processes it is possible to build teams of skilled peer educators who work as volunteers within formal volunteer organisations to support new and emerging groups of patients who want to learn more about managing their chronic illnesses more effectively.
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Such leader and facilitator groups can support people with chronic illness in collaboration with other health professionals to complement the more clinical aspects of their care and to encourage compliance in relation to their care plans and the use of their prescribed medications. In one generation we have moved from having diabetes, for example, managed exclusively by physicians to individuals being educated to manage their own blood sugars and insulin and to be much more aware of the factors that could lead to a crisis in their care that might result in hospitalisation. In short, people with diabetes are now, with the support of their clinicians and allied health professionals, much more in control of the management of their illness than they were a few short years ago when this whole process was managed entirely by clinicians and with patients having very little knowledge about or understanding of their condition. In the next section in this book on gambling and self-management (chapter 15), we explore the possibility of people with gambling addiction and other co-morbid conditions adopting a self-management strategy to complement their one-to-one therapy programme. Peer educators in our gambling programme support clients who are new to the treatment plan, explain how the programme works and what the new clients can expect from this treatment. We are currently in the process of extending this approach to by training past clients of the service to work more comprehensively as peer leaders and supporters of clients both during their formal treatment programme and after they have been discharged. It is postulated that such involvement of trained peer educators will make the treatment more effective and efficient in the short term and, in the longer term, reduce relapse to problem gambling by those who have been through the treatment programme [214]. Individuals, with the support of their peers, can overcome their gambling problems and learn the skills required to enable them to remain free of the clutches of the organised gaming industry. This empowerment of clients to support others not only reduces the burden on the limited numbers of trained psychotherapists available to treat gambling clients, much like practice nurses now reduce the day to day demand on GPs, but sends a powerful message that people can do more for themselves and for each other than they have believed possible in the past. As discussed in other chapters, there is an inherent self-fulfilling prophecy about people being bound to the health care business by the belief that everything about their health needs to be managed solely by health professionals. We are, in fact, trained to believe this and in the process voluntarily abrogate our own responsibility for the creating and management of our own wellbeing. The self-management process, whilst being politically driven to some extent by the reality that we simply do not have enough or cannot afford enough health practitioners to manage our health like we have in the past, is also a positive process for re-educating and re-empowering individuals about how they can contribute constructively to building and maintaining health as well as managing illness when it eventually occurs. The next step in this process, logically, is to educate people at an early age to take more responsibility for determining their long-term health status and wellbeing. By being aware of key aspects of health maintenance and by holding on to the control of key aspects of their lives rather than passing these to health professionals as a matter of course, people can keep themselves healthy while reserving limited health care resources for when they are really needed.
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Clearly there are some factors; environmental, economic and educational, that determine the context in which individuals live and strive, but awareness of key health messages, along with strategies to support better health, will help people take control of their lives and their health to a greater extent than has been the case previously. Obvious messages about… eating a balanced diet, having a healthy approach to regular exercise, eating less meats and fatty foods, reducing sugar & salt intake with our food, moderating the use of fast foods with low nutrition value, reducing the intake of other dangerous substances, being aware of early warning signs (metabolic syndrome for example). …all put individuals back in the driver‟s seat when it comes to managing their health. Some people we have worked with in chronic illness programmes only need to learn a few basic things that they either did not know or had come to overlook in their busy lives and this is sufficient to change their lives. People say, „is that what I need to do? Why didn‟t someone tell me this before?‟ By helping patients to learn that the onset of type 2 diabetes is not pre-determined, but can be managed and even avoided completely by reducing the intake of certain foods and taking regular exercise is all that some people need to know in order to be set on a new path to self-managing their health. Also, by supporting patients to participate in care planning processes with their health professionals and, through this mechanism, empowering them to talk more openly with their GP, to ask questions and to share information about how they themselves want to manage their health will change the health care dynamic. One of the tasks addressed in the self-management programme we use is to encourage patients to write a letter to their GP explaining how they would like to proceed with the management of their care. Many consumers of health care services today are also more empowered by their access to the internet and on-line information. People today do their own research and are sufficiently informed about their condition to enable them to ask pertinent questions of their health care providers about their treatment and medication regimen, for example. In previous generations this would not have been possible as health professionals were seen as the repository of all relevant knowledge about health care and illness management. This is no longer the case!
Chapter 14
GAMBLING ADDICTION AS AN EMERGING CONTEXT FOR SELF-MANAGEMENT Self-management in its many forms and permutations is about the individual learning how to deal with aspects of their lives that have progressively been institutionalised by one system or another; the health care system, for example. In this process, and as our lives become increasingly complex, more and more aspects of our daily being are influenced by outside institutions. We no longer service our own cars, we are not able to manage the power provisions to our house, we don‟t grow and manage many components of our food production processes [4] and we are even losing control of the preparation, cooking and presentation of our food. Similarly, health care has become the preserve of highly specialised and highly trained professionals and quite removed from the individual. Our health, like our modern car, has become a technical business which is almost entirely out of the hands of the consumer. It is possible for individuals to take back control of some aspects of their lives that have been lost to institutions because we either do not have the time or the space to manage these things or because they have become, like our cars, too technical for the average person to contemplate. At the hard end of the spectrum in health self-management, patients learn to take over some of the monitoring and management aspects of their chronic conditions such as diabetes monitoring and dietary intake. However, the process extends far beyond this to individuals learning early in their lives about how best to manage lifestyle choices in order to reduce the risk of conditions such as diabetes from manifesting in the first place. In this context, self-management is about individuals taking more ownership of and responsibility for the way they live and work and as such, the self-management process is part of all aspects of our lives, including the management of adverse conditions such as heart disease, asthma, mental health conditions and addictive behaviours such as problem gambling, to list a few. Gambling addiction, and in particular addiction to gaming machines or poker machines, has become a major socially determined and health related problem in Australia and in other developed countries in recent years [215, 216]. „It is estimated that there are at least 290,000 people in Australia with a gambling problem, and that for every one person with a gambling problem there are between 5 and 10 others who are negatively affected. This equates to more than 2 million Australians being affected by problem gambling.‟ [217, Fact Sheet 1]
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Gambling addiction is often co-morbid with a range of chronic illnesses including depression, anxiety as well as drug dependence and is considered to be a chronic condition and axis one diagnosis within the Diagnostic and Statistical Manual of Mental Disorders (DSM4) classification of mental illness [218]. It is a socially constructed and determined condition that can be managed and „cured‟ [219]. In any event, the nature of the condition means that gambling addiction, as well as being treated effectively through CBT approaches, could also be managed, it is postulated, through a combination of professional treatment, peer education and self-management strategies [80]. Cognitive Behavioural Therapy (CBT), and in particular graded exposure to gambling stimuli, is proving a successful strategy for helping patients overcome or master their urge to gamble. Early work is demonstrating that people with an uncontrollable urge to gamble can learn to overcome this urge through a short treatment programme and be able to carry on a normal life, free of the debilitating urge to gamble. Evidence suggests that people who have allowed gambling to dominate their lives to their detriment are able to resume normal, gambling free lives and no longer be troubled by their gambling problem [220-223]. Whilst this treatment regimen is good news for problem gamblers, the logistics of implementing such a service to all those who need it (some suggests that more than 2% of the population have serious gambling problems) presents a challenge [217]. Insufficient trained therapists and the difficulties of distance and time mean that it is not possible for therapist to meet demand for their individual or even group therapy clients. Clearly other solutions need to be found; some of which are already being employed such as videoconferencing, phone links and web-based services, but even with these innovations there is still an enormous unmet need for gambling therapy and support services in the community. Given the success of self-management programmes in other spheres of health care treatment and management [14, 41, 224-226], it is therefore reasonable to extend the principles and practices of self-management in chronic illness to the treatment and ongoing self-management of problem gambling. Models exist for this type of approach and could be used as a guide for the development and implementation of peer education and selfmanagement approaches to the treatment of gambling addiction. As in the management of other chronic conditions, the interface between where specific clinical intervention ends and self-management programmes begins will need to be delineated, but potentially such approaches could lead to a much wider application of gambling treatment programmes for those in need of such services. An additional potential benefit also exists, as in other chronic condition management programmes, where peer education approaches to health related problems are more accessible and much more userfriendly than programmes run purely by health professionals. Given that the stigma associated with gambling problems is probably more pronounced than that associated with chronic conditions such as diabetes, the peer education and support process would mean that many more people in need of help would feel confident to approach and participate in such programmes. Today there are many industries employing millions of people in an effort to mitigate problems that are created by our dependence upon industries such as war, oil, internal combustion engine technology, elicit drugs, tobacco, alcohol, fast foods, sedentary computer games and more recently, gambling. Many of the problems caused by these industries and businesses need not have been created in the first instance. The modern harm creation and mitigation process that surrounds these key industries is becoming big business, but the
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question remains, especially in an era dominated by self-management initiatives designed to control the negative impacts of chronic illness, for example, does the harm creation business need to exist to the extent it does? Are the so called benefits of these industries really worth what they ultimately cost communities in the long term? Can we do without the negative impacts of such industries? In the current climate, new systems are being set up to provide support, therapy and treatment for people addicted to gambling, predominantly gaming machine gambling. Just like other addictions, this one is also preventable, but because of the latent tendencies for modern people to indulge in one form of addiction or another [213, 227], society has come to accept that the proliferation of gambling, along with its attending deleterious effects, is part of our mainstream culture. The logic therefore goes that we now need to invest in treating the damaged people and managing the major and minor impacts upon families and communities that result from our current pre-occupation with gambling along with all the other forms of addiction to which we are attracted. Much like a society is committed to managing the destructive effects of war, communities commit to paying the longer-term cost of industries, processes and fads that have become part of our way of life.
A CASE IN POINT In South Australia the gaming machine industry alone produces profits of around $800m per year, of which around forty percent is paid in taxes to the State Government. That is, the State currently profits from gaming machine proliferation and use to the tune of around $300m per year [228]. In order, then, to deal with the adverse impacts of this apparently productive commercial business upon individuals, families and communities [229, p15] the State and the gaming industry have together created a fund pool and a remediation strategy to provide counselling, support services and therapy for people with gambling addictions. These funds are administered by the Department of Families and Communities through the Office for Problem Gambling (OPG) [217]. This new industry has also recently spawned its own set of service delivery standards to which industry partners must adhere in order to retain their licences to do business and, ironically, to achieve exemptions from other regulations to which they might also become subject and liable at a later date [228]. All of this activity has, basically been about buoying up the flagging hotel industry which is currently enjoying a major recovery on the back of gaming revenue especially now that drink driving legislation, anti-smoking rules and the shift away from hotels as family entertainment bases are all taking their toll on the industry. „The advent of gaming came at a time when it was estimated between 40-50% of SA‟s hotels were suffering a financial crisis. The introduction of gaming allowed these businesses to meet urgent financial commitments, while the vast majority of hotels with gaming machines have been able to upgrade their facilities to the point where SA now boasts some of the best hotels in Australia. Today the hotel industry in SA has a capital and commercial value in excess of $2.1 billion, and expenditure on redevelopments as a direct result of gaming is more than $463 million.
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In this emerging context, however, evidence suggests that around 2% of people in Australian have a serious gambling problem or gambling addiction. Gambling addiction, is defined as “…persistent and recurrent maladaptive gambling behaviour that disrupts personal, family and vocational pursuits” [218]. Recent prevalence studies in the United States and Canada estimated 1-2% of the adult population met the diagnostic criteria for pathological gambling [231, 232]. In Australia and indeed worldwide, gambling activity has reached unprecedented levels. Total annual gambling expenditure in Australia now exceeds A$17.5 billion (Office of Economic and Statistical Research, 2007). As a percentage of household disposable income, gambling increased from 1.5% in 1980/81 to 3.0% in 2005/06 (Office of Economic and Statistical Research, 2007). Many other jurisdictions are also following this trend (e.g., New Zealand, Britain, some parts of Canada and the United States). Public casinos operate in all Australian capital cities as well as in other large urban areas. Electronic gaming machines (EGMs) (gambling devices similar to fruit machines and slot machines) are permitted in hotels and clubs in all states and territories except Western Australia. These machines offer very high intensity gambling with high speeds, high stakes, and large prizes. Because of their omnipresence and simplicity and the attraction of large jackpots, EGMs operating in clubs and pubs now dominate the Australian gambling landscape, accounting for well over half of all gambling revenue nationwide. EGMs have also been the gambling format most closely associated with gambling-related problems. With such unprecedented growth, the effects of gambling are coming under intense public, political, and academic scrutiny. In particular, the issue of problem gambling has been the most focussed upon. Although much debate surrounds how to define, measure, and understand problem gambling, for the purposes of this paper, the following definition is used: 'Problem gambling is characterised by difficulties in limiting money and/or time spent on gambling which leads to adverse consequences for the gambler, others, or for the community'…[232, p66]
Pathological gambling is now recognised and treated as a mental illness (DSM4) [218, 233, p592]. The impact of gambling addiction on behaviour and personality is similar to that of addictive drugs; the addict loses the ability to resist the impulse to participate in behaviour around their addiction, they create false ideation about the processes of gambling and in order to recover from their addiction they require systematic counselling or behavioural and cognitive therapy of one form or another. That is, they need to re-learn how to live and deal with their uncontrollable impulse to participate in the gambling process [234].
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THE SELF-MANAGEMENT APPROACH In a time when effective management of other illnesses (diabetes, heart and lung conditions, arthritis and metabolic syndrome) is being achieved increasingly through education and self-management programmes for suffers of these afflictions [61, 235], we continue to create contexts in which more problems are bound to occur; problems that need not exist. That is, our current lifestyle choices and social behaviours are incubating a range of chronic diseases that need not exist at all, or if they do materialise, they do so at much later in ones life than is currently the case [87, 111, 236, 237]. In the case of gaming machine addiction, the route to effective population-based prevention seems obvious in the context of constructs such as the social determinants of health [11, 157, 238] and calls to manage gambling addiction through population health strategies [232]. Perhaps this route is a little more convoluted in the case of diabetes and heart disease, but the principles remain the same. Our social and work cultures contribute to population health problems and then profit from both the industries themselves in the first instance (food, lifestyle and gambling, for example) and from the treatment or remediation of the fall-out from such enterprises and industries after the fact. Large business structures now surround the production of machines to manage sleep apnea or to produce the drugs to manage cholesterol and diabetes as well as costly therapies to treat gambling addictions. A „Continuous Positive Airways Pressure‟ (CPAP) machine for controlling sleep apnea sells for around $3000 and the myriad drugs now available to control sugar, lipid and cholesterol levels drive multi-billion dollar sales each year, whereas in many cases, a small increase in metabolic fitness would obviate the necessity for these utilities [104, 239]. In addition, a range of self-help and anxiety related treatments proliferate in response to the helplessness of the afflicted consumer [61, 227, 240]. So why do we not take the more natural route to a healthier society and prolonged individual life [34]? In the case of gambling addiction remediation, therapists could be more productively occupied dealing with real problems encountered by individuals and families; problems that have grown out of more complex chains of causation such as trauma, violence, abuse and chemical imbalances in the body. But of all of the parties in this equation of harm creation and mitigation, the most strikingly paradoxical must surely be the case of the gambling industry; particularly the addictive gaming machine industry that accounts for the majority of gambling addiction problems in South Australia [241]. Observations around the country show that gaming machine revenue is now the lifeblood of the hotel industry. No longer are hotels about families, food, entertainment and an occasional celebratory drink! Dining rooms are being turned into gaming rooms where, as one operator said recently, „returns to the hotel doubled when the poker machines were put into the larger dining room area‟. Not only are the hotels relying for profit on people losing their money on poker machines, but the government is also relying on the taxation revenue to fund its programmes in other areas of need such as schools, roads and health. Certainly only about 1% of the revenue raised through gambling taxation is re-directed towards problem mitigation and treatment for resultant addictions [242].
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IMPLICATIONS OF THE HARM CREATION AND MITIGATION CYCLE The basic implication of this harm creation and mitigation cycle is that the creation of unnecessary problems and then the so called solving of them is nothing more than a new business cycle construct, designed, implemented and managed for profit; profit generated in the treatment cycle that would not be required if the initial problems were not created in the first place. Solution; remove the cause of the problem!
GOOD MONEY AFTER BAD The endless cycle of gambling dependence on a macro scale mimics that of the individual gambler‟s cycle of addiction, remediation and relapse. What is interesting, however, is that when people with gambling addiction finally seek help for their problem and receive treatment, the vast majority end up back in repeated cycles of gambling, remediation and relapse. That is, even the treatment industry is unable to break this powerful cycle of abuse and relapse; a cycle set up by the mechanism of harm creating and remediation, which is simply a business profit cycle that continues to grow over time like a pyramid selling scam. Everyone is involved and dependent on the cycle so there is nothing to be gained by closing the gaps and eliminating the harm…too much business is being done through in the process to allow it to fail. An old analogy to this is the use of the internal combustion engine and the ability of this old industry to work out its cycles of production, consumption, remediation (gradual improvements in fuel efficiencies etc) until the inter-dependency of the internal combustion engine industry, the fuel or petroleum industry and the remediation industry are no longer viable generators of surplus capital.
THE PROCESS IN SUMMARY The industry creates the gambling problem in the interests of its business model and short-term profit (in SA, mainly to support the failing business models of the existing hotel industry); The community then responds, much like the chronic illness management industry, by creating a treatment and mitigation industry around the resultant fall out from the industry…both arms of the business are enormously profitable, creating extensive business structures and employing thousands of health professionals, counsellors, academics and product developers; Numerous brands of treatment from abstinence, avoidance, distraction, CBT, behaviour therapy, music therapy and mindfulness therapy to versions of Eastern mysticism are all find their way into the market; In addition, and in collaboration with therapy, various other „lower level help services spring up to help the afflicted problem gamblers…family support, financial counsellors, life coaches, religious oriented groups, group workers and industry boffins all getting into the act;
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Cost-benefit analyses are yet to be carried out in relation to such service provision and remedial work for problem gambling; There is little evidence that treatment works for the longer term or that „recovery‟ from gambling is any more than the manifestation of natural cycles in gambling behaviour, remission and relapse triggered by a range of social contexts in the life of the gambler; Most gambling treatment outcome studies are short term and based on small sample sizes and poor follow-up data and generally show nothing more than hawthorne effect changes over the short term [243]; The industry is still not sure what the gambling cycle is, what triggers it and to what extent problem gamblers self-treat and recover.
CONCLUSION Much illness and chronic disease in society can be directly linked to the economic and social conditions of human existence. Type-2 diabetes, for example, is linked to lifestyle factors like dietary and exercise factors as well as genetic predisposition. Other afflictions, however, such as gambling addiction and the anxiety and depression associated with it are even more obviously linked to the social and economic conditions of existence, with the problem being directly related to the expansion of a gaming industry that generates profit for its investors as well as taxes for the States in which the activity occurs. Treatment of gambling addiction, like treatment of diabetes, is possible and can be effective, but the full cost of treatment and of the impact of the gambling industry on society generally, exceeds the returns generated in the short term. The damage persists as long as the devices of gambling persist and in this context, the industry and Government profit superficially because the full cost of the problems created is not recognised or counted. In such a situation, early intervention and prevention strategies could limit the „take‟ of the industry and reduce its adverse impacts upon the individual and society. The gambling industry, particularly the proliferation of electronic gaming machines in society, is a wonderful example of how self-management, both at the societal and individual levels, could remediate the damage caused by industries like this. In the same way, changes to the fast food business and to the culture of sedentary life now emerging in the west could reduce the incidence of chronic and complex health conditions that are now being visited upon our populations earlier and earlier in the life cycle.
Chapter 15
EARLY INTERVENTION TRAINING AND PEER EDUCATION The techniques used in Chronic Condition Self Management programmes (CCSM) to support patients with chronic conditions are basic counselling and communication strategies that would benefit people at all stages of life and wellness. The question being explored here is why we wait until people develop preventable chronic conditions before helping them to develop the life skills they need to manage their lives and their human interactions better instead of working to avoid or prevent many of the chronic conditions that people develop as a result of a lack of these skills? If we were to teach these coping and managing skills to everyone in a supportive and structured way, using the peer-led teaching and learning strategies and basic counselling and education processes that have been shown to be successful for other older groups with chronic illness, our overall impact would be more significant in the scheme of things. Why wait until people have chronic conditions before empowering them with these basic life management techniques? Do people need to be sick before they can be motivated to live more effective lives? Is sickness the most powerful trigger for individual and community change? Can other factors in people‟s lives serve to inform and motivate lifestyle change?
PREMISE More and more attention continues to be devoted, through private health fund initiatives and government supported programmes and interventions, to the idea that the adverse impacts of illness and disease represent a cost and burden to society that we do not need to carry to the extent that is the case currently. Such illnesses, especially lifestyle related diseases such as many chronic health conditions, can be mitigated successfully through individuals assuming more responsible and healthy approaches to their lives and to the management of their health and wellbeing. That is, we can improve wellbeing and reduce the financial impact of illness upon the health system through educating people in approaches to healthy living and by developing their skills for participating positively and constructively in the management of their care earlier in life [65, 135, 244-246].
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Peter William Harvey „Many things designed to make life easier, from remote control to non-iron sheets, have really only made us more sedentary. Studies show that the Amish are much less likely to get fat than other Americans. If you stop seeing repetitive chores as drudge work and instead look at them as a meditative form of mild exertion, you will be helping the weight loss and wellness cause in a big way.‟ [247, p213]
Indeed, creating and sustaining such behaviour change in our population in relation to lifestyle choices appears to be crucial to health service management and to securing the future of subsequent generations in both developed and developing countries [151, 191, 236]. Such efforts, however, remain focused on people with chronic illness and are yet to grapple with longer-term earlier intervention and prevention of illness that will be necessary if we are to improve individual and population based health and wellbeing. We can‟t simply wait until chronic illness becomes evident and then learn to manage it. Rather, we need to prevent much of this illness burden from occurring in the firsts instance as well as putting resources into managing actual cases after the fact. It is postulated here that components of the chronic illness self-management approach deployed with patients who have chronic and complex illness might also be deployed advantageously with younger people to prevent or delay onset of chronic conditions in this population [247, p233]. Researchers have been developing and testing care planning and patient-centred education processes through programmes like the Sharing Health Care SA (SHCSA) demonstration project [14, 81, 82, 85] as well as encouraging community partnerships and the formation of volunteer and self-help groups to support patients to manage their chronic conditions. It appears now that the prevention and management of chronic conditions will continue through collaboration between health service agencies, GPs and community volunteer groups across Australia [116], but at the same time we also need to be doing more for younger people to ensure that their lifestyle choices leave them with the best chance of optimising their health and wellbeing for the future. The crisis in relation to confirmed cases chronic illness is being addressed by major government and private health system initiatives today, but we need to develop more preventive approaches as well as working to improve quality of life for existing chronic illness sufferers [236, p5]. As we have seen, „Recent developments in primary health care, preventive care, early intervention programmes, population health constructs and coordinated care trials in Australia have explored the idea of changing our emphasis in health care from responsive acute care to more integrated, whole population community wellbeing management. This idea suggests that much illness and even trauma experienced by individuals in our communities can be prevented or managed in a more constructive and positive manner than has been the case to date. Much disabling illness need not occur at all and can be avoided through better community based management models, education programmes, and lifestyle changes that contribute to more healthy communities‟ [248].
We are now becoming more cognizant of the fact that prevention is not only an appealing idea in terms of achieving improved health outcomes and quality of life, but that it is also good for business. It can help to moderate demand for costly health care, assist consumers to understand how to live healthier and more fulfilling lives and help to sustain much more dynamic communities generally. The alternative to such approaches to health care is to continue to respond, at great expense, to health problems as they occur and in a reactive
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manner. This also implies an acceptance of the fact that we will need to spend an increasing proportion of GDP on end point health care in the future if we continue to allow the degradation of our living space and our lifestyles to affect our wellbeing adversely…„prevention in all things starts in childhood.‟ [247, p235] We are now in a good position to improve self-management opportunities for younger people by adapting the principles of chronic illness self-management, currently being developed for patients with chronic conditions, for younger people. Such earlier intervention and self-management training approaches for younger people may serve to inform their lifestyle, choices which if left uninformed and un-managed could result in the significant expansion of the numbers of people with chronic conditions in the future [236]. Indeed, in the US, „Sixty percent of over-weight 5-10 year old children already have one biochemical or clinical cardiovascular risk factor such as hyper-lipidemia, elevated blood pressure or increased insulin levels, and 25% have two or more [249] and Australia is following the American trend closely. Improvements in this alarming trend might be made through adopting an approach to education and preventive health that is based on person centred goal setting and lifestyle planning and which is informed through the application of effective life skills education in relation to healthy diet, exercise and improved self-management for healthier living and quality of life. It is clear, given the earlier onset of conditions such as diabetes in our community today, the tendency for more students to be overweight and more sedentary in their behaviour and our growing fascination with electronic media, that there is much we could be doing to assist young people to avoid the early onset of chronic illnesses. A preventive approach is one possible strategy to achieve the objective of improved quality of life for our entire populations. The relatively insignificant cost of implementing this strategy, when compared to the social, emotional and financial costs of creating a society that will be overwhelmed by preventable illness, chronic disease in the future is a cogent argument for beginning this work as soon as possible. Booth notes that… „A large majority of chronic diseases are preventable by engaging in low-risk lifestyles. Low-risk behaviour was defined as a combination of five variables; BMI less than 25; a diet high in serial fibre and polyunsaturated fat and low in trans fat and glycemic load (which reflects the effect of diet on the blood glucose level); engagement in moderate to vigorous physical activity for at least half an hour per day; no current smoking; and the consumption of on average of at least half a drink of an alcoholic beverage per day [250] sited in [236]
THE COHORT The focus of such a programme would be the whole community, beginning with students in schools where recent work has highlighted alarming trends in increased obesity levels. „Secular trends in Australian children's body fatness are continuing. Further, the rates of change in girls are affected by the socio-demographic milieu.‟ [251].
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Post-school environments and other context in which organised learning takes place might also be targeted. A preventive health and life planning process could be integrated into all facets of living and learning. It is true that, to some extent, aspects of this kind of programme are already in place through some teaching programmes in schools, churches and youth groups and in some family structures in which young people are coached and mentored effectively to optimal health and wellbeing. For the vast majority of people, however, there is little formal support offered through which they are able to aspire to optimal health or even begin to grasp what such a concept means. In many communities and for many individuals the material conditions [24, 125, 130, 252-254] of life are major impediments to good health [255, p73]. We know that socioeconomic status can predict health outcomes in some situations [91, 93, 95], but in our current climate of indulgence and lethargy even economically well off communities are prone to the risk of high levels of chronic and preventable illness. Economic factors are, therefore, not the only predictors of health status we might need to be aware of in relation to the future management of chronic illness. It is, however, possible to structure approaches to learning and living that support people at all levels of the community and assist them to develop life skills to optimise their health related opportunities rather than feeling alienated and oppressed by daily events over which they have no control. It is not necessary to have a „revolution‟ [23, 24, 256] to give people better access to quality of life; we can work with what we have! Indeed, this is all we are able to do! What is needed to ensure better management of lifestyle and health-related opportunities in the community is wider access to knowledge and communication processes through formal programmes of support for learners of all ages and at all levels of the culture. Peer education appears to be a useful strategy in this process.
THE PROGRAMME Local research in this area has begun with the collection of baseline data across a range of school communities and age groups to obtain a sample of BMI, activity rates and dietary patterns of young rural people as is currently being gathered by local researchers [251, 257]. This baseline data could then be used to construct intervention programmes leading to the development of a range of school-based curricula and activities around peer-led training, role play and behaviour reinforcement approaches creating and sustaining behaviour change in young people towards lowering lifestyle risk factors in the population. The focus of this type of research, as in CCSM programmes, would be on determining the optimal conditions for participation in lifestyle programmes rather than measuring clinical outcomes per se. We know the key elements of successful lifestyle options, what we do not know is how to engage young people and sustain that engagement to achieve lowered lifestyle related health risks in this population. A similar paradigm has been observed in relation to the treatment and management of diabetes and other chronic conditions [54]. Once pilot work is completed, a comparison intervention study could be run over 12 months or more to document the impact of student participation in self-help and peer-led
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programmes and ultimately a longer-term study could be established into the health outcomes resulting from student participation in the programme.
CONCLUSION To date we have been persuaded by the burgeoning rates of chronic illness in our community that strategies need to be implemented to manage the impact of chronic disease, improve patient health status and reduce the inevitable burden that these trends will place upon the health care system. However, whilst the management of existing chronic illness problems is now becoming a more important priority for governments and private insurers, we appear to be ignoring a looming crisis in regard to the health status of our younger populations; a population which will fuel and even faster acceleration of chronic illness rates as it, in turn, ages and becomes prematurely and adversely affected by essentially preventable chronic health problems. Given that existing health programmes for young people are not addressing these new problems to the extent that might be desired, it is proposed that education and support strategies that have been adopted for adult populations to assist in the management of the effects of chronic illness might be adopted with younger populations as an overall preventative health and lifestyle education strategy. As we move increasingly to populationbased approaches to the management of health [136, 248, 258] and implementation of preventative health care strategies [259], it will be essential that communities develop ways of relating to and working with young people that can mitigate the deleterious effects of new and emerging health-related threats to our overall community wellbeing. Peer education appears to be successful among older population groups, with participants indicating that they prefer such approaches to the traditional health-professional-led programmes and with early outcomes indicating significant improvements in knowledge, selfmanagement skill and health status of participants [41]. An adaptation of this model may well be the next logical step in the process of building more effective and pro-active self-managing communities [14].
Chapter 16
THE HEALTH CARE INDUSTRY REVISITED: A GLIMPSE OF THE FUTURE From the concept of health care coordination to patient self-management and beyond, the essential message today is that populations have been dispossessed of the control of the very essence of their lives and are now paying a capitalised price for the salt they once put on their food at minimal cost; a commodity that has until recently been virtually free and readily available naturally. They outsource all commodities from food production, food preparation, clothing, transport, education and health care and in the process abrogate the control they have over these processes and are then forced to buy back professional services and packages in order to meet their basic needs. In short, in Marx‟s terms, the surplus capital of industrialisation having been mined, we are now beginning to extract a premium for things that hitherto were not reckoned into the surplus value equation. The wider self-management concept (ie henceforth human development) is about reeducating and re-orienting people to do more for themselves and to rely less on the packaged services of others; especially those packages that show no real outcome or benefit for the consumer. This process involves the way we learn and live, the life choices we make and ultimately the quality of our lives and of our individual and population health. We have become dependent upon packages and services that cost too much and don‟t really deliver any benefit. Especially in the current economic climate, we could begin to consider owning, controlling and influencing more of our life and selling less of it to other agencies. the locus of control returned to the individual with all the implications for freedom and responsibility, change and efficiency at individual to organisational level the focus should be on how we make the change from the level of the individual to the level of large organisations…ie action centric, outcome based, empowering, efficient The focus is on enabling individuals and organisations to take more responsibility for their choices and ultimately for their overall health and wellbeing. This is self-controlled and self-orchestrated living and working and being, without the draining and debilitating effect of parasitic organisations and people and practices; which we clearly can no longer afford.
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Peter William Harvey The Goal: To encourage and support more people to take control of their lives and their health through education and personal development towards life independence. The premise: Evidence from self-management programmes shows that individuals can take back control of key aspects of their lives (diet, social interaction, lifestyle, chronic illness management and overall health) and live a better managed life which leads to improved health status and health outcomes. The research question: How can we re-orient our thinking and living to enable more people to manage their lives actively and to be more cognizant of the fundamental life processes that affect their health and wellbeing (consider the level of the individual, to the family and wider society)?
THE IDEOLOGICAL IMPLICATIONS OF EMERGING MODELS OF PERSONAL AND ORGANIZATIONAL INDEPENDENCE – BACK TO THE FUTURE! For a range of reasons articulated elsewhere [14, 28, 55, 60, 65, 81, 226, 236, 260] selfmanagement is becoming the order of the day in modern culture in response to our ageing population, early onset chronic illness, burgeoning cost of routine care and the impact of new technology. Consequently, people are tentatively being encouraged to take more responsibility for managing their own health, lifestyle choices, what they consume and even for managing their addictions. In short, it is becoming imperative that people do these things and, paradoxically, after a lifetime of disempowerment and alienation from the processes of control, people are now being asked, encouraged and even urged to assume a greater role in life and health management [14, 87, 101]. The notion of people being empowered to manage their own lives appears to have arrived in the guise of self-management. This is not a bad thing, as many aspects of daily living have been progressively annexed by creeping bureaucracy and specializations that have seen the time poor modern citizen reduced to paying other people for everything from house cleaning to medical care and even motor cycle maintenance [261]. Up until recently, and with the ever increasing pace and crush of modern lifestyles, individuals have been relieved of responsibility for almost all aspects of their lives; life options that in other times they would have been totally responsible for; food production and preparation, animal and machinery maintenance, primary health care, education, finances, child birth and nurturing and even ageing and death. The ideology of modern consumer driven capitalism has worked to extract surplus value from almost every aspect of our lives. We rely on and pay professional managers to organize our finances and investments, professional teachers to teach our children, personal trainers to manage our exercise programme, professional health care managers to manage our health systems, illness and death and we even rely on professional wine makers to make our wine. This need not necessarily be the case in future! The specialization of professions is a trait of modern culture. No longer can an all-round person understand and manage most aspects of their increasingly complex being in the world. We can not all understand the technologies used in our cars, televisions, videos, computers, cameras, phones and other gadgets so we pay an increasing proportion of our available wealth to others who then look after all of these essential aspects of our lives for us. Gone are the
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days of da Vinci and the „renaissance man‟! However it is now becoming important in a number of industries (eg health) that people take more responsibility for their lives at the individual level because our current supply driven health service provision models are overloaded and too expensive. This has come about purely because the professional systems, the hospitals and clinics, have become so complex to run that they cannot manage the burgeoning business of sickness that has been generated. Other strategies are now urgently needed. One of these is the self-management initiative in health through which patients learn to become more independent of the professional system, do more for themselves and rely less on external interventions when these are not clinically needed. Such developments might be a blessing in disguise in that people can now re-learn how to empower themselves to take control of many of the fundamental aspects of their lives which have been annexed by creeping professionalism. It is an irony that our crowded and over-stressed health system has come to this impasse after generations of misappropriation of people‟s health in order to build the profitable business around sickness, illness and death. Today, however, we can no longer afford the level of sickness we are creating. Sickness across a range of profiles from early onset and preventable chronic illness to the sickness associated with our ageing population has become too expensive to manage so the managers are now imploring the consumers to take back some of the responsibility for monitoring and managing their health care.
THE ALLEGORY OF WINE MAKING For centuries ordinary people turned water into fruit and fruit into wine in a perennial seasonal process. Today few people make their own wine, believing perhaps that the complex chemistry of winemaking is beyond them, that they do not have the time or can‟t be bothered with such a messy business or even that wine making is no longer an important part of daily life and is therefore something to be left behind in our modern world. Those people who do like to drink wine, therefore, are left dependent upon a wine making industry that dictates our tastes and our pleasures and makes wine for us in a mass production process that yields tired and tasteless wine made to a recipe and where quality is determined not by the fluctuations of the season and natural fermentation, but by the defined through-put needs of the industry. Fermentation is controlled with chemicals; accelerated or slowed down based on the need to optimise the flow of the grape juice through the system and because the process is interfered with all along the way, other chemical additives enter the mix at various stages to preserve the wine or to soften it for immediate consumption. Artificial flavours are added to make the wine appear something that it is not and new varieties of grapes are foisted upon us by businesses trying to gain and monopolise market share in the industry much like the tobacco companies inventing new brands to capture the next wave of potential consumers with the latest smoking trend or fashion. It is possible, however, to make your own wine and good quality wine at that! This can be done in a timely manner in accordance with local conditions to result in a naturally fermented and fine wine that needs no preservatives or chemicals to keep it stable and drinkable. Naturally made wine can be enjoyed as young fresh wine or as older, softer, more mature wine in future years. Producing wine in this way is an enjoyable, social process, it is
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cheap, chemical free and allows the makers to enjoy the fruits of their own labour without falling victim to the multi-national wine growers‟ collective. The cost of a bottle is less that $2, compared with the stock commercial swill at $25. The principles of wine making and individual empowerment are analogous to the principles of self-managing lifestyle choices and personal health. It is possible to do many of the things ourselves that we have become dependent upon systems to deliver for us. We can be empowered and encouraged to make healthy choices about how we live and if and when we do become ill, we can also learn how best to manage our conditions without excessive reliance on the health care juggernaut. The self-management phenomenon embodies a degree of paradox in that for generations consumers have been increasingly alienated from the complex process of maintaining their health and wellbeing. Health care has become more and more the preserve of highly trained professionals. In the process, consumers have been persuaded to abrogate their responsibility [139, p202] for their lives generally as they are trained to be passive consumers of everything from education to motorcycle maintenance and the way they manage their health. In the end, Conway suggests, „we are confronted with an Orwellian nightmare of entire societies debauched by childish oral-narcissistic and anal-acquisitive appetites which are justified by the scientific jargon of economists and made to seem sober and ethical by the use of statistics [139, p203]. The creation of passive consumers has been central to the development of the wider consumer society upon which much wealth and economic growth is currently predicated in the west. Growth depends on consumption, but certain types of consumption can sometimes have negative impacts on our health even though it is good for business in the short term. It appears that the balance in this process is now out of kilter. Interestingly, we are now becoming more aware as a culture that the orchestrated alienation [262] of consumers may be economically detrimental to both the individual and society generally and that better-informed, participating consumers might lead to the creation of healthier and more functional communities [11]. Blind consumerism, at least in the case of health care, is becoming undesirable from a systems perspective also. Alternatively, people are being encouraged to become „responsible consumers‟ and „partners‟ in the system rather than mindless consumers of everything we can get our hands on when it comes to health care. When it comes to KFC, however, we may be encouraged to consume and up-size blindly, but in relation to expensive health care, which is necessarily capped at a pre-determined level of GDP, we must be parsimonious in the interests of the health of the whole community and, of course, of our own wellbeing. This presents a very difficult paradox for people to resolve and indeed a difficult contradiction with which to grapple; trained consumers must become re-trained and responsible partners when it comes to health care! The essential challenge of selfmanagement programmes in health is therefore, in the first instance at least, to assist consumers and health professionals to lessen the load of Sisyphus‟s rock and resolve this paradox by learning to take more control over the essential conditions of our existence. Ironically, this is the very control that we have all been schooled and encouraged hitherto, through specialisation and the modern clamber, to hand over to others without so much as a second thought. The next step, of course, is to build this regained personal control into health enabling strategies that help prevent unnecessary illness in the first place [87, 101, 111].
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OVERVIEW OF KEY ISSUES AND POSSIBLE WAYS FORWARD 1. There is a crisis of health systems isolation and failure to deliver outcomes. 2. Projected growth in demand, driven by the supply business in health, is outstripping the potential for systems to pay. 3. Available cash is declining so the projected demand for health services can not be met in the future. This either means less services for all or services only for those who can afford to pay inflated prices. 4. Much effort has been put into re-engineering the health system to achieve efficiencies and improved outcomes, to prevent illness and to assist people to manage their health better [14, 15, 28, 32, 82, 263]. 5. We have had major reviews and recommendations for systems change [264], but the escalation in demand and cost for health care continues. 6. We need an outcome based system that funds population and preventive health care rather than the treatment of sickness alone; that is, we need a paradigm shift in the way we work to improve community health. 7. A business has grown in response to the vast sums of money provided by governments and private insurers to pay for health service supply, but there is no cap on demand and over-servicing has resulted. In the process the consumer has been disenfranchised and manipulated into consuming more and more health care services because of lifestyle practices that encourage consumption while leading to poor health outcomes. 8. There are parallels here in other industries where established vested interests have controlled processes to serve their own ends whilst damaging whole communities… eg motor vehicle industry, internal combustion engine companies, the choice of 50 CPS alternating current systems, fast food chains, cigarette companies, the mental health industry, the farmer/water crisis along the river Murray, the failure of conventional banking and investment businesses resulting in the global financial crisis, approaches to war (WW1, India, Malaya, Korea, Vietnam, Cental America, Iran, Iraq, Afghanistan that have served the interests of the war machine and not those of reason). All of these phenomena reflect an inability for systems to make the right choices in terms of the long-term wellbeing of communities while being bound up in anachronistic operational paradigms. 9. How to make change in such a situation is the fundamental question. How do we shift focus from illness creation and treatment to wellness creation and management as a core principle in health care and system organization? who would raise awareness and galvanize thinking around this issue, how can the interests of communities and consumers be better served, how can we build a system that supports health (ie lifestyle, habits, food, social and psychological harmony as opposed to chaos). 10. We need more of a focus on change leadership research rather than the standard paradigm that discovers what is best for us, but lacks the ability to implement the processes that we have learnt are beneficial…Heraclitus suggested that change is the only constant (but how do you manage and lead change) [6, 265]? 11. Example: the SA Generational Health Review Summary [264] (intro 15)
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Peter William Harvey „What has to be done is pretty clear. There are really few surprises in this report. Not just in South Australia, but in other states and overseas, the importance of primary care being the foundation of a strong health service is widely accepted. Health takes 24% of the state budget. Getting efficiency and equity in health is important, not only for the health of South Australians but also for the state‟s economic future, as is well set out in its Economic Plan. It is clearly unsustainable for South Australia, with 12% lower per capita incomes than the rest of Australia, to spend 4% more on health with no discernibly better health outcomes.‟ Current Future Service focus Consumer focus Resources aligned with institutions Resources aligned with population need Historic budgets Budgets aligned to population needs Institutional silos Networked services Professional silos Multidisciplinary teams Custom and practice Evidence based practice Intermittent planning Planning cycles Multiple and independent support systems Shared support systems Service providers would also see a balance between: Statewide conformity consistency Local innovation Economies of scale Local responsiveness Budget certainty Budget flexibility Statewide planning Local planning Acute hospital based care Acute community based care Competition Cooperation
If fundamental change in the health system is the goal, then conventional approaches will not suffice. Real systemic reform is more of a transformation, initially of resources and structures, but more of vision and will, that drives continuous improvement. The ultimate goal of systemic reform is improvement in the health status and the provision of a safe, efficient and effective health care system. Many public and private organisations have shown how change can be led and managed for improved outcomes. Systemic change: involves all the parts of the system, changes an organisation‟s way of doing things and addresses underlying issues rather than focusing on surface problems requires thinking with a system‟s perspective and addressing the whole system, including policies and practices at all levels involves new relationships among people and institutions, with collective dialogue and decision making rather than hierarchical arrangements [264, p181].
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President Obama mirrors the findings of our small health care system on the other side of the world from the United States. He summarizes the problem of health care in developed countries [266, p23]. And yet, at the same time, the way forward is not clear when it comes to the degree to which systems direct and manage the behaviours of individual consumers. Obama alludes to the need to tread a fine line between allowing civil liberty and individual choice and legislating for controls, even if such control might appear to be good for us. “Not many Americans would feel comfortable with the government monitoring what we eat, no matter how many deaths and how much of our medical spending may be due to rising rates of obesity.” [266, p56]
The dilemma persists and will not be easily resolved, but one thing is certain in this debate and that is that the cost of us continuing to live and manage our health as we have in the past is rapidly becoming unaffordable. New ways of living, eating, working, socializing, interacting and exercising must be found or the cost of keeping people alive with multiple chronic conditions will become prohibitive and if we don‟t move to change these dynamics, other larger economic factors will change them for us.
Chapter 17
CONSUMER STORIES TERRY Terry lived alone for 5 years after the death of his wife from a heart attack. He lived in a small house in an isolated neighbourhood where he did not get out much. His only companion since the death of his wife has been his ageing cat. This social isolation compounded his health problems; diabetes with co-morbid cardiovascular disease, high blood pressure and metabolic syndrome. Living on his own he ate snack foods high in carbohydrates and frozen meals that he bought from the supermarket and he took no regular exercise. He ate very little fruit and virtually no fresh vegetables. When approached to join the local self-management programme on referral from his treating GP Terry commented that it would be a waste of time because his cat would soon be dead and that he‟d be next. Terry was depressed and had no vision for his life in the future. He was living a lifestyle that compounded his illness, which due to his state of mind at the time he did not manage at all well. He relied on regular visits to his GP to remediate his condition with medication. This lifestyle left no room for exercise, fresh food or home cooked meals and was leading to increasing incidences of depression, helplessness and even thoughts of suicide. Following Terry‟s eventual engagement with a self-management group he now visits the local community centre regularly and is involved in running the consumer support service offered by this community controlled and independently incorporated volunteer service. As a result, he is socialising more and his general outlook is much more positive, even though he is living and dealing with complex health conditions.
GWEN Gwen was 65 years old when she was encouraged to join a self-management group and take part in a six week self-management training programme. She had lost her husband some years earlier and, although not seriously ill, she suffered from arthritis which tended to keep her indoors and inactive because of the pain involved with the condition.
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After a few sessions with the peer education group, she began to notice a difference in her mobility and general activity. She began setting goals to walk more and to spend more time with her grandchildren. By the end of the programme she was considering becoming a peer educator herself and soon became involved with the leader training programme. She went on to lead many groups herself. In the process she established Tai Chi sessions and now regularly leads classes for others. Her arthritis symptoms have moderated and she lives a very active and healthy lifestyle while at the same time helping others to take more control over the management of their lives and their health.
ALAN AND MARGARET Alan left work some years ago because of problems associated with his type 1 diabetes for which he needs insulin and a very structured lifestyle and diet. His wife Margaret also suffers from diabetes (type 2) and arthritis. They both attended a self-management programme on the recommendation of their GP where they learned ways of managing their lives and conditions that improved their quality of life and health outcomes. They both now manage their illness well and have found that by being more in control of their lives they are able to enjoy a more active and rewarding lifestyle including travel to visit family and friends rather than staying at home as had been the case earlier. Following successful participation in the self-management programme, Alan and Margaret became peer educators and team leaders for self-management programmes in a major rural centre. Today they manage a volunteer training centre dedicated to providing selfmanagement programmes for others in their community who suffer with chronic and complex health problems.
Chapter 18
HEALTH APHORISMS Today even the seed from which we grow our food is owned, controlled and sold back to us by multi-national companies. Is this the best way to ensure biodiversity and to safeguard our seed store? Who owns the seed stock of a nation, the farmers who know about farming or the investors and managers who know about profiting at the expense of the farmer? The old people used to say that you should spend your money on good food…either this or spend even more on doctors and medical bills. The days of the „farm gate‟ mentality are over…farmers today should not abrogate their responsibility for marketing their products by handing them over to middle man profit makers, but rather control the production process right down to the dinner table. Those who can‟t afford to do so buy fast foods? In towns and cities around the country, people with time on their hands watch television and go out to buy pre-packaged and pre-cooked food. With their time, they could, alternatively, grow the food for and prepare their own meals. When we were poorer and spent our lives chasing each other around the bush we were skinny and healthy. Now we are richer we don‟t run. We sit and watch and wait at our door and we make ourselves sick. One time we ate chicken for Christmas because it was so special. Now we eat chicken every day. What happened to Christmas? Our Italian friends eat only what is in season, but for most of us everything is in season all of the time. How confusing this must be for people with a sense of taste and for our bodies. So many people are engaged in treating the sick! How much more efficacious it would be if we were to treat the system that was making us sick rather than treating the individual illness. The rich live healthier lives than the poor, it is clear, but are we to accept this as the way things should be? If it takes a tonne of grain to raise a pig, why not eat the grain and do away with the need to raise the pig? By letting chickens run free to lay their eggs naturally, eggs will become more expensive, but how much sweeter the eggs will be and will they not be worth the extra money we spend on them.
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If you think you are getting a cheap price for food, be assured that someone, somewhere will ultimately pay the full price. When it comes to our health and our food production, for every good deal there is a bad deal; for every winner a loser. Why raise goats for their meat when you can drink their milk…why feed animals with grains we can eat [131]? We are truly what we eat! If you dam your neighbour‟s stream to nourish your own crops he will be angry and will attack you. If you share the water with the environment and your neighbour, both of you will have crops to reap and a world to enjoy.
Chapter 19
CONCLUSION THE GOOD NEWS ABOUT CHRONIC ILLNESS CARE New systems are now in place to better assist people to live effectively even though they have chronic and complex conditions. Better coordinated care, care planning and integrated care, along with improved education about health management processes, medication compliance enables people with chronic illnesses to live in the community and minimise their risk of hospitalisation events caused in previous years by unforseen clinical problems and poor medication compliance. Today people are relating to their health professionals more as partners; patients negotiate their care, discuss options, establish and follow structured care procedures, whereas in the past health professionals were the ultimate arbiters of health care and the patient merely someone who was told what to do. With the growth of the internet, often consumers are more informed about their health care options than their general practitioner or health care provider. People are reading labels on packaging and understanding what to look for in terms of side effects and other risk factors when choosing medications or treatment options. Consumers today also have much more equitable and balanced relationship with their health care providers than was the case in previous generations. In short, more people today are interested in their health and health care than was the case in the past. They are looking to be more active managers of their lives and their health and are seeing beyond the more traditional approaches to life and work and life beyond work and seeing themselves, even in retirement, as being intricately involved in making key decisions about their health. In this context, older people, when committed to helping themselves in relation to managing their health, are looking forward to making ongoing contributions to society, to business and to the economy as they age [34].
BEYOND MANAGEMENT OF CARE TO PREVENTION With all of these innovations around chronic illness management today, we still do not invest enough, however, in early intervention and prevention programmes, preferring, it seems, to work with people once they are sick rather than implementing education, community health programmes and population health strategies to work with or even remove
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the social conditions that contribute directly to ill health. Whilst many innovative approaches are making the lives of many much more fulfilling, the social and economic determinants of people‟s lives still impact adversely on many sectors of the community. As well as continuing to build on the progress outlined above, the social determinants of health must surely be the next serious target for health care reform. It is simply not acceptable that the gradient of health status should follow so closely that of economic capacity in our society. If a person chooses to live simply and to access and use less economic resources, or if a person is thrust into such a situation by factors beyond their control, this should not confine then to a life of sub-standard health and wellbeing. Access to endless cash should not be the sole determinant of a person‟s health status.
THE WIDER IMPLICATIONS OF SELF-MANAGEMENT Beyond early intervention and population health programmes to prevent chronic illness, however are lifestyle and environmental factors that are important at a macro level of our economy. The way we produce and process our food, the conditions in which we are forced to live and work and even the health of our river systems and environments all contribute to our individual and collective wellbeing. Increasingly we are recognising that the health of our ecosystems determines our own health and that these factors are inextricably linked. We can‟t abuse our environment and expect to remain healthy as a society or as individuals.
THE NEW HEALTH PROFESSIONAL – POLITICALLY AS WELL AS CLINICALLY SKILLED As the health management process becomes more complex and new population strategies are implemented to ease the burden of preventable chronic illness in the community a new look health professional will be emerging from our training institutions. Integrated team approaches to care will become more common and more effective ways of coordinating and delivering care will become the norm. Already we are noticing in Australia that GPs are working more in multi-disciplinary teams and sharing the care of their patients with practice nurses and allied health staff who are all involved in preparing and monitoring patient care plans [267]. Finally, James Lovelock reminds us of the importance of connecting with our natural world through our daily living and about the nature of our existence and its connection with our overall well being. „No wonder obesity is rife; we grow fat and die of metabolic diseases like diabetes, strokes and heart attacks, not just from overeating but as much from lack of exercise. Consider how few children ever walk to school or away from the city lights to see starlight sprinkled like jewels on black velvet or hear a cuckoo calling in spring. Governments are aware that something could be wrong with the way we live and therefore have departments concerned with the environment, but a closer look reveals that this deals mainly with roads and sewers and the planning of new towns. The natural world is acknowledged, but mainly as
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„unimproved‟ land suitable for wind farms, agribusiness, reservoirs and other large scale developments needed to service those living in the towns‟ [121, p107]
The self-management of our lives and our health for improved health status and overall community health is, in part, the responsibility of individuals and relates directly to the lifestyle choices people choose to make. Beyond this, however, larger environmental, social, political and economic factors establish the context in which individuals are actually able to manage. Some groups in society are not well positioned for this challenge and as a result bear a disproportionate burden of ill-health and chronic and complex disease. At this level, the self-management potential of individuals depends directly upon fundamental factors such as access to education, reliable employment, income and basic life security. While major disparities continue to exist between individuals and communities, barriers to people taking control of and managing their lives effectively will emerge. Due to a lack of control over the basic elements of their lives, people are literally forced to exist in ways that lead them to less desirable health outcomes. Given all of this, progress is being made in encouraging and supporting people with chronic disease to improve their self-management skills and abilities as a way of not only reducing demand on the health care system, but of improving individual self-efficacy and quality of life. Beyond the problem of already existing chronic illness management, we are also becoming more aware of the larger, earlier intervention factors that can help delay or prevent the onset of illness; that is, people are learning to manage their lives for health rather than abrogating this responsibility on the assumption that the sickness management business / system will look after them when their health fails.
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[131] Moore-Lappe F. Diet for a small planet. 5th ed. New York: Random House; 1984. [132] Marx K, Engels F. Das Kapital: a critique of political economy / Karl Marx ; edited by Friedrich Engels. Levitsky SL, editor. Chicago: Regnery Gateway; 1952. [133] Malthus T, Pullen JE. Principles of political economy. Cambridge, New York: Central Books; 1820. [134] Malthus TR, Bettany GT. An essay on the principle of population; or, a view of its past and present effects on human happiness with an inquiry into our prospects respecting the future removal or mitigation of the evils which it occasions. London, New York: Ward, Lock and Company 1890. [135] Fries J, Carey C, McShane D. Patient education in arthritis: randomised controlled trial of a mail-delivered program. Journal of Rheumatology. 1997;24:1378-1383. [136] Harvey PW. Approaches to Population Health Care - the emerging context. Australian Journal of Primary Health. 2005;11(2):45-53. [137] Wilson P. A policy analysis of the Expert Patient in the United Kingdom: self-care as an expression of pastoral power? Health and Social Care in the Community. 2001;9(3):134-142. [138] Poulton B. User involvement in identifying health needs and shaping and evaluating services: is it being realised? Journal of Advanced Nursing. 1999;30(6):1289-1296. [139] Conway R. The great Australian stupor - an interpretation of the Australian way of life. Melbourne: Sun Books - Macmillan Australia; 1985. [140] Mechanic D. The stability of health and illness behaviour: results from a 16-year follow-up. American Journal of Public Health. 1979;69(11):1142-1145. [141] Heidelberg AT. Chronic disease management programmes are criticised by doctors. BMJ. 2002 Aug 17;325:356. [142] Von Korff M, Gruman J, Schaefer J, Curry S, Wagner E. Collaborative management of chronic illness. Annals of Internal Medicine. 1997;127:1097-1102. [143] Rollnick S, Butler C. Health behaviour change: a guide for practitioners. Churchill Livingstone. 1999:24-25. [144] Miller W, Rollnick S. Motivational Interviewing: preparing people to change addictive behaviour. New York: The Gilford Press; 1991. [145] Conway R. The rage for utopia. New South Wales: Allen & Unwin; 1992. [146] McMurray A. Community health and wellness: a sociological approach. 2 ed. Sydney: Mosby Publishers; 2003. [147] Raphael D. The question of evidence in health promotion. Health Promotion International. 2000;15(4):355-367. [148] The Elders Ambassador Group. Look, think, Act: indigenous stories about living with diabetes. second printing (2004) ed. Port Lincoln: Port Lincoln Aboriginal Health Service, Royal District Nursing (RDNS) Research Unit and Spencer Gulf Rural Health School; 2002. [149] Bindman A, et al. Preventable hospitalisations and access to health care. JAMA. 1995;274(4):305-311. [150] Mechanic D. Lessons from the unexpected: the importance of data infrastructure, conceptual models and serendipity in health services research. The Milbank Quarterly. 2001;79(3):459-477.
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[216] Chene C. Problem Gambling "like a new disease". CMAJ. 2005;173(1). [217] The Office for Problem Gambling. Problem Gambling Website. Adelaide: Department of Families and Communities; 2008; Available from: http://www.problemgambling. sa.gov.au/. [218] American Psychiatric Association. Diagnostic and statistical manual of mental disorders (DSM4). 4th ed. Washington DC: American Psychiatric Association; 1994. [219] Gega L, Marks I, Mataix C. Computer-aided CBT self-help for anxiety and depressive disorders: experience of a London clinic and future directions. Journal of Clinical Psychology 2004 Feb.;60(2):147-157. [220] Commonwealth of Australia. Australia's Health, 2000 - The seventh biennial health report of the Australian Institute of Health and Welfare: Australian Institute of Health and Welfare2000. [221] Tolchard B, Battersby MW. Nurse behavioural psychotherapy and pathological gambling: an Australian perspective. Journal of Psychiatric and Mental Health Nursing. 2000;7(4):335-342. [222] Toneatto T. Cognitive Therapy for Problem Gambling. Cognitive and Behavioral Practice. 2002;9:191-199. [223] Toneatto T, Ladouceur R. Treatment of Pathological Gambling: A Critical Review of the Literature. Psychology of Addictive Behaviors. 2003;17(4):284-292. [224] Battersby MW, Ah Kit J, Prideaux C, Harvey PW, Collins JP, Mills PD. Implementing the Flinders Model of self-management support with Aboriginal people who have diabetes: findings from a pilot study AJPH. 2008 April;14(1):66-74. [225] Fries JF. Measuring and monitoring success in compressing morbidity. Annals of Internal Medicine. 2003;139:455-459. [226] Lorig K, Sobel DS, Ritter PL, Hobbs M. Effect of self-management programs on patients with chronic disease. Effective Clinical Practices. 2001;4(6):256-262. [227] Johnson R. Your drug or your life: prescriptions for getting clear. Adelaide: Transformational Enterprises; 2002. [228] AHASA. Australian Hotels Association. Adelaide2009; Available from: http://www.ahasa.asn.au/gaming. [229] Gambling Research Panel. Validation of the Victorian Gambling Screen. In: McMillen J, editor. Melbourne: The Centre for Gambling Research, ANU; 2004. p. 69. [230] AHASA. Gaming and Hotels. Adelaide2009; Available from: http://www.ahasa.asn.au/ gaming. [231] Ladouceur R, Walker M, Bellack A, Hersen M, Christiansen E, Frey J, et al. Pathological gambling: an increasing public health problem. Acta Psychiatrica Scandinavica. 2001;104(4):241-242(242). [232] Marshall D. Gambling as a public health issue: the critical role of the local environment. Journal of Gambling Issues. 2009 June 29(23). [233] Gooding P, Tarrier N. A systematic review and meta-analysis of cognitive-behavioural interventions to reduce problem gambling: Hedging our bets? Behaviour Research and Therapy. 2009. [234] Oakes J, Riley B, Harvey PW, Battersby MW, Morefield K, editors. Cognitive Behaviour Therapy (CBT) treatment for people with gambling addictions: a programme model and early outcomes. 39th Annual Congress of European Association of Behaviour and Cognitive Therapy (EABCT); 2009 September; Dubrovnik, Croatia.
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[255] Smith JD. Australia's rural and remote health - a social justice perspective. Melbourne: Tertiary press; 2004. [256] Engels F. Dialectics of nature. London: Lawrence & Wishart; 1941. [257] Booth ML, Chey T, Wake M, Norton K, Hesketh K, Dollman J, et al. Change in the prevalence of overweight and obesity among young Australians, 1969-1997. American Journal of Clinical Nutrition. 2003;77(1):29-36. [258] Kindig DA. Understanding population health. Milbank Quarterly. 2007;85(1):139-161. [259] South Australian DHS. The Generational Health Review. Adelaide: Department of Human Services; 2003. [260] Harvey PW. Beyond coordinated care in rural communities. The Australian College of Health Service Executives (ACHSE) and Australian Healthcare Association (AHA) SA; June 22; Adelaide2001. [261] Pirsig RM. Zen and the art of motorcycle maintenance. New York, Sydney1981. [262] Durkheim E. Suicide: a study in sociology - translated by John A. Spaulding and George Simpson. London: Routledge and Kegan; 1952. [263] Commonwealth Department of Health and Ageing. Second Round Coordinated Care Trials. Canberra2008; Available from: http://www.health.gov.au/internet/main/ publishing.nsf/Content/A-Z. [264] Menadue J. Final Report of the South Australian Generational Health Review Better Choices Better Health. In: Health, editor. Adelaide: South Australian Department of Health; 2003. p. 251. [265] Lao-Tzu. Tao Te Ching. London: Penguin Classics; 1963. [266] Obama B. The audacity of hope - thoughts on reclaiming the American dream. Melbourne: Text Publishing Company; 2006. [267] Battersby MW, Harris M, Reed RL, Harvey PW, Woodman RJ, Frith PA. A randomised trial of the Flinders Program to improve patient self-management competencies in a range of chronic conditions: study rationale and protocol. Australasian Medical Journal. 2010;1(3):198-204.
ABOUT THE AUTHOR This book is written by Peter Harvey with contributions from John Petkov and Chris McGowan. Peter McDonald, Malcolm Battersby, Rene Pols and Peter Frith are acknowledged for their major contribution to the ongoing work in chronic illness prevention and management in Australian and internationally. Peter Harvey: PhD, B Ed, Dip T Associate Professor in Health Sciences Flinders University phone: +61 8 82046404 fax: +61 8 84042101 email:
[email protected] Peter has a background in education, curriculum development, consulting and organizational change. His work in the health sector has focused mainly on developing integrated primary care programmes, coordinated care and chronic illness management strategies to improve health outcomes and funding efficiencies in rural and remote communities in South Australia. From 1996 to 2000 he led the rural component of the South Australian Council of Australian Governments (COAG) coordinated care trial; a geographically controlled trial involving 1350 intervention and 550 control patients with chronic and complex conditions. His PhD, completed in the School of Medicine, Faculty of Public Health at University of Western Australia, was based on the COAG Coordinated Care Trial and explored the health benefits and systems change processes of South Australia's rural sector trial. From 2001 to 2004 he managed the Sharing Health Care SA chronic disease selfmanagement project in rural South Australia; a project of the Spencer Gulf Rural Health School. From 2003-2008 he was a chief investigator with the Centre of Clinical Research Excellence (CCRE) in Aboriginal and Torres Strait Islander health in South Australia. This was a National Health and Medical Research Council (NH&MRC) funded collaborative project between the Aboriginal Health Council of South Australia (AHCSA) and Flinders University. Peter holds an adjunct Senior Research fellow position with Spencer Gulf Rural Health School; a programme which involves both the University of South and the University of
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Adelaide. He also currently manages the State-wide Gambling Therapy Service (SGTS) in South Australia where he is working to implement self-management strategies for people with gambling problems and other co-morbid conditions. The SGTS is run through Flinders University and the Adelaide Health Service providing treatment and support for over 500 clients a year who seek help for their gambling addictions. Peter is a member of the executive of the Southgate Institute and the Flinders Human Behaviour and Health Research Unit at Flinders University and Deputy Director of the recently established Flinders Centre for Gambling Research. He is also a chief investigator with the Cooperative Research Centre in Aboriginal Health (CRCAH) chronic condition management programme and with the Southern Adelaide „Patient Competencies‟ chronic disease management and care planning project.
ABOUT FLINDERS UNIVERSITY Flinders University in South Australia is involved in a range of chronic condition management and self-management innovations and leads research and programme development in the field of chronic illness management and prevention through the Flinders Human Behaviour and Health Research Unit Team. Ten years of research and clinical application of the Flinders self-management programme in a variety of settings and countries has led to more robust reinforcement of the components of the Programme, the education and training options and adaptations for special populations. Based on its inception in the SA HealthPlus coordinated care trial (1997-99), and subsequent research and development, the Flinders care planning process has five functions: 1. Generic and holistic chronic condition management: it provides a generic clinical process for assessment and planning for disease specific management. It uses a semistructured framework which could be applied to any chronic disease or condition and co-morbid conditions in the same person, that is patient centred and holistic i.e., incorporates the bio (disease) psychosocial aspects of a person into a plan, and is motivational. 2. Case management: The Partners in Health scale can be used as a screening tool to determine who requires full care planning and case management. The care plan itself then becomes the case management model by defining the roles of the health professionals and the client, the need for case management or coordination could be determined. (Not all people with chronic conditions need support or education or case management). 3. Self-management support: The care planning process enables assessment of the person's self-management knowledge, behaviours and barriers so as to be able to target self-management education and support to the person. 4. Systemic and organisational change: the program provides a longitudinal structure, which if followed naturally leads to the development of an integrated care plan for each patient which addresses: self-management issues; evidence based medical care; motivation and maintenance of effort; a care plan for each medical condition which is measurable and monitored and meshes with public or private practice business processes.
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Peter William Harvey 5. Clinician change: Use of the Flinders ProgramTM can change a clinician's understanding of their practice in delivering patient centred care. The Flinders ProgramTM provides a semi-structured method of ensuring that patients are fully engaged in the delivery of their own care. The quality of the therapeutic alliance is optimised.
ABOUT THE BOOK SERIES “HEALTH AND HUMAN DEVELOPMENT” Health and human development is a book series with publications from a multidisciplinary group of researchers, practitioners and clinicians for an international professional forum interested in the broad spectrum of health and human development. Merrick J, Omar HA, eds. Adolescent behavior research. International perspectives. New York: Nova Science, 2007. Kratky KW. Complementary medicine systems: Comparison and integration. New York: Nova Science, 2008. Schofield P, Merrick J, eds. Pain in children and youth. New York: Nova Science, 2009. Greydanus DE, Patel DR, Pratt HD, Calles Jr JL, eds. Behavioral pediatrics, 3 ed. New York: Nova Science, 2009. Ventegodt S, Merrick J, eds. Meaningful work: Research in quality of working life. New York: Nova Science, 2009. Omar HA, Greydanus DE, Patel DR, Merrick J, eds. Obesity and adolescence. A public health concern. New York: Nova Science, 2009. Lieberman A, Merrick J, eds. Poverty and children. A public health concern. New York: Nova Science, 2009. Goodbread J. Living on the edge. The mythical, spiritual and philosophical roots of social marginality. New York: Nova Science, 2009. Bennett DL, Towns S, Elliot E, Merrick J, eds. Challenges in adolescent health: An Australian perspective. New York: Nova Science, 2009. Schofield P, Merrick J, eds. Children and pain. New York: Nova Science, 2009. Sher L, Kandel I, Merrick J. Alcohol-related cognitive disorders: Research and clinical perspectives. New York: Nova Science, 2009. Anyanwu EC. Advances in environmental health effects of toxigenic mold and mycotoxins. New York: Nova Science, 2009. Bell E, Merrick J, eds. Rural child health. International aspects. New York: Nova Science, 2009.
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Peter William Harvey Dubowitz H, Merrick J, eds. International aspects of child abuse and neglect. New York: Nova Science, 2010. Shahtahmasebi S, Berridge D. Conceptualizing behavior: A practical guide to data analysis. New York: Nova Science, 2010. Wernik U. Chance action and therapy. The playful way of changing. New York: Nova Science, 2010. Omar HA, Greydanus DE, Patel DR, Merrick J, eds. Adolescence and chronic illness. A public health concern. New York: Nova Science, 2010. Patel DR, Greydanus DE, Omar HA, Merrick J, eds. Adolescence and sports. New York: Nova Science, 2010. Shek DTL, Ma HK, Merrick J, eds. Positive youth development: Evaluation and future directions in a Chinese context. New York: Nova Science, 2010. Shek DTL, Ma HK, Merrick J, eds. Positive youth development: Implementation of a youth program in a Chinese context. New York: Nova Science, 2010. Omar HA, Greydanus DE, Tsitsika AK, Patel DR, Merrick J, eds. Pediatric and adolescent sexuality and gynecology: Principles for the primary care clinician. New York: Nova Science, 2010. Chow E, Merrick J, eds. Advanced cancer. Pain and quality of life. New York: Nova Science, 2010. Latzer Y, Merrick, J, Stein D, eds. Understanding eating disorders. Integrating culture, psychology and biology. New York: Nova Science, 2010. Sahgal A, Chow E, Merrick J, eds. Bone and brain metastases: Advances in research and treatment. New York: Nova Science, 2010. Postolache TT, Merrick J, eds. Environment, mood disorders and suicide. New York: Nova Science, 2010. Maharajh HD, Merrcik J, eds. Social and cultural psychiatry experience from the Caribbean Region. New York: Nova Science, 2010.
CONTACT Professor Joav Merrick, MD, MMedSci, DMSc Medical Director, Medical Services Division for Mental Retardation Ministry of Social Affairs POBox 1260 IL-91012 Jerusalem, Israel E-mail:
[email protected] Home-page: http://jmerrick50.googlepages.com/home
INDEX # 20th century, 52
A Aboriginal and Torres Straight Islanders, 53 Aboriginal Health Council of South Australia (AHCSA), 159 abuse, 12, 27, 119, 120, 142 access, 12, 20, 26, 27, 54, 70, 77, 79, 83, 84, 94, 104, 109, 113, 126, 142, 143, 152 accountability, 20, 79, 90 accounting, 91, 118 activity rate, 126 adaptation, 127 adaptations, 161 additives, 109, 131 administrators, xi, 90 adverse conditions, 62, 115 advertisements, 76 Afghanistan, 133 age, 2, 29, 30, 52, 54, 55, 59, 60, 61, 63, 71, 74, 84, 91, 112, 126, 141 ageing population, 29, 30, 73, 85, 86, 130, 131, 146, 147 agencies, 25, 26, 78, 124, 129 aggregation, 2 Aggressive management, 53 agriculture, 108 airways, 52 alcohol consumption, 2 alcohol use, 77 alienation, 13, 75, 130, 132 allergy, 104 altruism, 153 American Psychiatric Association, 156 antagonism, 14, 26
antithesis, 14 anxiety, 13, 29, 59, 64, 116, 119, 121, 145, 156, 157 apnea, 119 appetite, 109 appropriate technology, 5 aquifers, 71 arthritis, 29, 119, 137, 138, 148, 152 asbestos, 54 assessment, 16, 26, 145, 150, 154, 161 assessment tools, 150 assets, 30 asthma, 12, 60, 61, 62, 115 Australian Bureau of Statistics (ABS), 30 autonomy, 101 avoidance, 90, 120 awareness, 65, 74, 99, 113, 133
B baby boomers, 74 bacteria, 103 banking, 36, 133 barriers, 7, 143, 161 base, 10, 24, 90, 96, 101 basic needs, 129 beef, 69 benchmarks, 15, 19 benefits, 3, 20, 25, 26, 27, 30, 35, 52, 56, 61, 63, 70, 78, 81, 94, 111, 117, 148, 159 bias, 56 binding energy, 102 biodiversity, 139 biological systems, 52, 108 black hole, 155 blame, 6 blood, 2, 61, 71, 100, 112, 125 blood pressure, 100, 125 blueprint, 147
166
Index
BMI, 35, 125, 126 body composition, 157 body fat, 125 bone, 103 bonuses, 25 bowel, 55, 103 brain, 164 breathing, 67 Britain, 118 bronchitis, 12 bureaucracy, 9, 130, 146 business cycle, 120 business model, 20, 60, 120 business organisation, 103 business processes, 161 businesses, 66, 67, 71, 84, 116, 117, 131, 133
C cancer, 2, 55, 103, 109, 164 cancer screening, 55 capitalism, 12, 13, 130, 157 capitalist production, 12 carbohydrates, 137 cardiovascular disease, 1, 29, 30, 54, 55, 137 cardiovascular risk, 125 care model, 14, 17, 92, 95 Caribbean, 4, 164 cash, 9, 27, 133, 142 casinos, 118 catalyst, 20 categorization, 101 cattle, 65, 70, 108 causation, 76, 77, 83, 86, 119 Centre of Clinical Research Excellence (CCRE), 159 challenges, 76, 89 chaos, 88, 133 checks and balances, 94 chemical, 65, 109, 119, 131, 132 chemicals, 65, 84, 104, 131 Chicago, 152 chicken, 69, 70, 139 child abuse, 164 childhood, 53, 87, 125 children, 13, 53, 54, 78, 104, 125, 130, 142, 157, 163 cholesterol, 54, 119, 147 chronic disease self-management (CDSM), 79 chronic diseases, 30, 52, 57, 74, 91, 92, 119, 125 chronic illness, 1, 2, 3, 4, 7, 9, 13, 14, 18, 19, 29, 30, 31, 33, 34, 35, 36, 50, 59, 60, 61, 64, 69, 73, 74, 76, 77, 78, 79, 81, 86, 92, 93, 95, 96, 104, 111, 113, 116, 117, 120, 123, 124, 125, 126, 127, 130,
131, 141, 142, 143, 145, 150, 151, 152, 159, 161, 164 cities, 69, 109, 118, 139 citizens, 69 civil servants, 150 clarity, 90 class struggle, 12, 71 classes, 138 classification, 116 cleaning, 71, 130 clients, 112, 116, 160 climate, 66, 107, 117, 126, 129, 151 climate change, 66, 107, 151 climate stability, 107 clinical application, 161 clinical interventions, 30 clinical problems, 141 clothing, 129 CO2, 108 coaches, 120 coal, 65, 71 Cognitive Behavioural Therapy (CBT), 59, 116 cognitive function, 54 cognitive therapy, 118 collaboration, 78, 79, 81, 95, 104, 112, 120, 124, 146 collaborative approaches, 8 combustion, 116, 120, 133 commercial, 117, 132 commodity, 66, 69, 70, 129 common sense, 23 communication, 23, 104, 123, 126 communication strategies, 123 communities, 3, 5, 12, 13, 18, 33, 34, 35, 66, 67, 69, 70, 73, 74, 75, 76, 77, 78, 83, 84, 85, 87, 88, 89, 90, 92, 94, 96, 97, 101, 104, 107, 117, 124, 126, 127, 132, 133, 143, 147, 149, 158, 159 community, 2, 3, 5, 6, 7, 8, 9, 11, 12, 13, 14, 15, 16, 17, 18, 20, 25, 26, 29, 31, 33, 35, 36, 44, 51, 52, 53, 55, 56, 57, 60, 61, 66, 77, 79, 81, 83, 84, 85, 86, 87, 88, 90, 91, 92, 93, 94, 96, 116, 118, 120, 123, 124, 125, 126, 127, 132, 133, 134, 137, 138, 141, 142, 143, 148, 155, 157 community service, 93 community support, 35 compensation, 97 competing interests, 109 complement, 65, 103, 112 complex interactions, 89 complexity, 29, 76 compliance, 25, 76, 79, 112, 141 complications, 59, 75, 76, 100 compression, 31, 51, 52, 84, 86, 147 Compression of Morbidity, ix, 51, 52
167
Index computer, 116 conceptual model, 152 conditioning, 75, 76 conference, 155 configuration, 8 conformity, 134 Congress, 156 consciousness, 76, 77, 85 consensus, 9, 61 construct validity, 149 construction, 6 consulting, 159 consumers, 2, 36, 56, 61, 65, 69, 73, 74, 75, 76, 78, 80, 93, 104, 109, 113, 124, 131, 132, 133, 135, 141, 155 consumption, 2, 64, 65, 66, 67, 69, 70, 71, 75, 76, 104, 108, 109, 120, 125, 131, 132, 133 consumption habits, 67 contradiction, 76, 132 control group, 11, 16 controlled trials, 157 conversion rate, 65 cooking, 62, 104, 115 cooperation, 26, 78, 79 coordination, 5, 6, 7, 14, 15, 16, 17, 18, 19, 20, 25, 26, 27, 33, 34, 35, 50, 61, 79, 85, 96, 129, 161 coronary heart disease, 101, 147 corporate sector, 67 correlation, 75 correlations, 44, 100 corruption, 99 cost, 2, 4, 5, 6, 8, 11, 13, 16, 20, 26, 29, 30, 36, 43, 44, 45, 47, 50, 52, 53, 56, 63, 65, 66, 67, 69, 70, 71, 81, 83, 85, 86, 87, 93, 95, 96, 97, 108, 117, 121, 123, 125, 129, 130, 132, 133, 135, 148, 150 cost saving, 43, 44, 45, 47, 50, 81 craving, 155 creep, 130, 131 crises, 19, 29, 50, 94, 95 criticism, 26, 76 Croatia, 156 crop, 2 crops, 140 cultivation, 145 culture, 12, 22, 30, 75, 81, 93, 99, 101, 107, 117, 121, 126, 130, 132, 155, 164 cure, 2, 52, 85, 99, 102 current balance, 10 curricula, 104, 126 curriculum, 78, 102, 104, 159 curriculum development, 159 cycles, 64, 65, 120, 121, 134
D daily living, 76, 130, 142 danger, 90 dangerous infectious diseases, 1 data analysis, 150, 164 data distribution, 37 deaths, 1, 135 deficit, 67 degradation, 125 demography, 146 depression, 1, 29, 59, 64, 107, 111, 116, 121, 137 deprivation, 12, 13, 93 destiny, 63, 145 destruction, 21, 66, 109 detection, 52, 55, 57 determinism, 6, 12, 13, 86 developed countries, 1, 29, 86, 115, 135 developing countries, 124 DHS, 9, 10, 20, 24, 26, 27, 95, 158 diabetes, 1, 2, 5, 7, 12, 29, 30, 52, 54, 61, 62, 92, 100, 107, 112, 115, 116, 119, 121, 125, 126, 137, 138, 142, 148, 151, 152, 156 Diagnostic and Statistical Manual of Mental Disorders, 116 diagnostic criteria, 118 dialogues, 56 diet, 3, 54, 70, 75, 86, 88, 100, 103, 108, 113, 125, 130, 138 dietary intake, 54, 62, 115 dignity, 19 disability, 2, 52, 53, 54, 55, 57, 63, 83, 86, 148, 154 diseases, 1, 29, 30, 52, 55, 85, 89, 91, 92, 93, 97, 108, 123, 142, 154 dispersion, 37, 38, 39, 42 disposable income, 118 distribution, 37, 42, 43, 44, 47, 48, 71, 102 doctors, 31, 87, 139, 152 domestic economy, 27 domestic violence, 53, 56 dream, 21, 84, 158 drug dependence, 59, 116 drug treatment, 5 drugs, 6, 64, 103, 109, 116, 118, 119
E early warning, 113 eating disorders, 164 ecology, 91 economic change, 96 economic consequences, 147
168
Index
economic development, 109 economic growth, 65, 70, 71, 75, 109, 132 economic problem, 85 economic resources, 83, 142 economic status, 12, 126, 157 economics, 34 economies of scale, 97 ecosystem, 88 editors, 146, 149, 150, 156, 157 education, 3, 6, 7, 18, 20, 22, 34, 35, 50, 53, 59, 60, 64, 66, 77, 78, 79, 86, 88, 92, 93, 94, 99, 102, 104, 111, 116, 119, 123, 124, 125, 126, 127, 129, 130, 132, 138, 141, 143, 152, 155, 159, 161 educational experience, 54 educators, 36, 60, 61, 111, 112, 138 egg, 108 elderly population, 30 emergency, 33 emotional problems, 104 emphysema, 12 employability, 53 employees, 8 employment, 6, 10, 12, 30, 54, 64, 93, 118, 143 employment status, 54 empowerment, 3, 16, 24, 54, 61, 69, 73, 74, 80, 99, 111, 112, 132 encouragement, 17, 18 endocrine, 88 enemies, 155 energy, 11, 22, 24, 66, 101, 102 energy input, 101 engineering, 93, 133 England, 101, 148 Enhance Primary Care (EPC), 35 environment, 2, 15, 17, 27, 56, 64, 65, 66, 69, 71, 74, 76, 83, 84, 88, 90, 91, 96, 99, 102, 108, 109, 140, 142, 154, 155, 156 environmental change, 64 environmental crisis, 65, 108 environmental factors, 8, 88, 89, 90, 94, 142 environmental influences, 76 environmental management, 153 environmental protection, 97 environmental sustainability, 108 EPC, 35, 61, 79, 95, 146, 149 epidemic, 1 epidemiology, 107 epistemology, 66 equity, 19, 67, 84, 134 erosion, 90 ethics, 145 ethnic background, 55 everyday life, 75
evidence, 6, 9, 31, 34, 61, 65, 76, 83, 84, 86, 87, 88, 90, 91, 94, 99, 101, 118, 121, 147, 151, 152, 161 evil, 102 evolution, 10, 85, 89, 100, 109 exercise, 3, 75, 100, 101, 103, 111, 113, 121, 125, 130, 137, 142 exertion, 124 exploitation, 10, 85 exposure, 10, 20, 54, 59, 84, 103, 116
F facilitators, 111 factories, 66 faith, 22, 23 families, 12, 77, 86, 104, 109, 117, 119, 146 family income, 12 family support, 93, 120 famine, 91 farmers, 100, 104, 139 farms, 108 fast food, 2, 104, 113, 116, 121, 133, 139 fat, 103, 109, 124, 125, 142, 157 fear, 20, 21, 27, 77 fears, 24 fermentation, 131 fertility, 30 financial, 15, 17, 20, 24, 25, 27, 30, 35, 52, 54, 60, 64, 74, 81, 90, 117, 120, 123, 125, 133 financial crisis, 117, 133 fish, 65, 71, 100, 108 fishing, 100 fitness, 100, 101, 119 flexibility, 134 fluctuations, 13, 131 fluid, 24 food, 2, 12, 62, 65, 67, 70, 71, 76, 91, 101, 102, 103, 104, 107, 108, 109, 113, 115, 119, 129, 130, 133, 137, 139, 140, 142 food production, 62, 108, 115, 129, 130, 140 force, 6, 70 formation, 6, 124 formula, 21, 90 foundations, 23 fragments, 145 freedom, 84, 129 fruits, 132 fuel tax, 2 functional approach, 24 funding, 5, 7, 8, 9, 10, 11, 15, 17, 19, 20, 22, 25, 26, 27, 33, 34, 35, 50, 55, 56, 61, 67, 79, 93, 95, 96, 159
169
Index funds, 5, 10, 12, 15, 25, 26, 27, 30, 34, 79, 90, 96, 117, 133
G gambling, 59, 60, 62, 76, 100, 112, 115, 116, 117, 118, 119, 120, 121, 149, 150, 155, 156, 157, 160 GDP, 2, 50, 67, 84, 125, 132 general practitioner, 7, 44, 47, 56, 141 genes, 92 genetic factors, 84, 89, 101 genetic predisposition, 121 geography, 153 global warming, 66, 108 glucose, 125, 150 glucose tolerance, 150 goal setting, 17, 34, 79, 80, 111, 125 God, 71, 102, 155 goose, 108 governance, 56 government intervention, 93 governments, 29, 31, 51, 70, 71, 86, 127, 133 graph, 47 greenhouse, 108 greenhouse gases, 108 group processes, 9 group therapy, 116 group work, 120 growth, 64, 65, 70, 71, 85, 87, 108, 118, 133, 141 guidance, 87
H habitat, 66 happiness, 152 harmony, 133 healing, 151 health care, xi, 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 14, 15, 17, 19, 20, 21, 25, 26, 27, 29, 30, 31, 33, 34, 35, 44, 50, 51, 52, 53, 54, 55, 56, 57, 60, 61, 62, 63, 64, 66, 67, 70, 71, 73, 74, 75, 76, 77, 78, 80, 81, 83, 84, 85, 86, 87, 91, 92, 94, 95, 96, 99, 104, 105, 107, 109, 111, 112, 113, 115, 116, 124, 127, 129, 130, 131, 132, 133, 134, 135, 141, 142, 143, 147, 148, 149, 152, 153, 155 health care costs, 1, 29, 51, 52, 53, 57, 81, 148, 149 health care system, 5, 6, 8, 11, 14, 15, 19, 35, 50, 52, 53, 67, 71, 74, 77, 81, 83, 91, 92, 94, 95, 111, 115, 127, 134, 135, 143, 147, 153 health condition, 1, 59, 60, 63, 121, 123, 137 health education, 19, 148, 153 health effects, 163
health industry, 1, 19, 60, 61, 67, 84, 133 health insurance, 99, 153 health practitioners, 112 health problems, 1, 16, 64, 70, 73, 77, 94, 99, 104, 119, 124, 127, 137, 138 health promotion, 7, 78, 85, 87, 89, 152, 154 health risks, 35, 109, 126, 154 health services, 14, 15, 18, 31, 33, 35, 37, 50, 54, 60, 67, 73, 77, 87, 93, 95, 96, 133, 152 health status, 3, 20, 56, 59, 60, 77, 85, 87, 88, 89, 101, 104, 107, 111, 112, 126, 127, 130, 134, 142, 143, 148, 150 heart attack, 137, 142 heart disease, 2, 29, 52, 62, 86, 107, 109, 115, 119 helplessness, 119, 137 hernia, 86 hernia repair, 86 high blood pressure, 54, 137 hip replacement, 56 history, 1, 6, 12, 16, 54, 55, 61, 102, 107, 151, 155 HIV, 52, 55 homes, 100 host, 25 hotel, 117, 118, 119, 120 hotels, 117, 118, 119 House, 152, 155, 157 housing, 88, 103, 104 human, 1, 3, 7, 13, 18, 20, 21, 22, 51, 52, 69, 71, 75, 76, 77, 86, 87, 91, 94, 99, 101, 107, 109, 121, 123, 129, 151, 152, 163 human body, 1 human condition, 109 human development, 129, 163 human health, 76, 86, 94 human interactions, 123 human motivation, 76 human nature, 22 husband, 137 hydrocarbons, 69 hyperlipidemia, 54 hypertension, 54
I ideal, 13, 24, 26, 51, 86, 111 idealism, 11 ideals, 21, 23 identification, 1, 26 ideology, 10, 12, 13, 14, 16, 20, 70, 77, 83, 85, 130 illness care, 2, 61 illusion, 21 image, 23 images, 9
170
Index
imbalances, 119 imperialism, 86 improvements, 6, 18, 31, 50, 52, 74, 79, 80, 120, 127 impulsive, 109 incidence, 5, 13, 17, 52, 53, 59, 64, 85, 91, 101, 121 income, 5, 7, 12, 52, 96, 100, 101, 103, 143 increased access, 149 independence, 17, 56, 130 Independence, 130 India, 133, 155 Indigenous health, 53, 91 individuals, 2, 3, 6, 13, 24, 54, 57, 62, 66, 69, 71, 74, 77, 78, 80, 81, 83, 84, 86, 88, 89, 91, 96, 99, 102, 107, 109, 112, 113, 115, 117, 119, 123, 124, 126, 129, 130, 142, 143 Indonesia, 66 industrial revolution, 13, 71 industrialisation, 129 industrialized countries, 92 industries, 2, 14, 65, 67, 71, 116, 117, 119, 121, 131, 133 industry, 1, 2, 3, 5, 19, 29, 60, 61, 66, 67, 84, 94, 99, 112, 117, 118, 119, 120, 121, 131, 133 inequality, 52, 150 inequity, 57, 94 infancy, 88 infant mortality, 89, 92 infection, 1, 56, 86 information technology, 56 infrastructure, 22, 31, 33, 56, 96, 109, 152 initiation, 24 injuries, 103, 154 injury, 2, 91, 97, 154 institutional change, 25 institutionalisation, 73 institutions, 62, 85, 86, 102, 115, 134, 142 insulin, 112, 125, 138 integration, 6, 14, 35, 38, 85, 163 intellectual property, 10 intellectual property rights, 10 interest groups, 90 interface, 116 internal consistency, 149 interpersonal relations, 75 interpersonal relationships, 75 intervention, 5, 6, 7, 11, 12, 13, 14, 15, 16, 17, 18, 19, 22, 29, 30, 34, 35, 44, 50, 54, 59, 60, 73, 74, 76, 87, 92, 93, 94, 95, 96, 104, 116, 121, 124, 125, 126, 141, 142, 143, 150, 159 intervention strategies, 16, 34, 50, 94 investment, 19, 22, 24, 25, 27, 31, 51, 53, 54, 55, 56, 57, 91, 133, 148 investment capital, 25
investments, 5, 34, 53, 54, 57, 85, 130 investors, 21, 67, 81, 121, 139 Iran, 133 Iraq, 133 iron, 71, 124 irony, 131 isolation, 24, 78, 85, 86, 95, 133, 137 Israel, 164 issues, 9, 77, 80, 83, 91, 111, 134, 155, 161
J Japan, 85 just society, 16
K Korea, 133
L lack of control, 143 landscape, 118 Lao Tzu, 22 laws, 149 lead, 16, 18, 20, 21, 27, 29, 35, 54, 65, 101, 112, 116, 132, 133, 138, 143, 146 leadership, 9, 10, 11, 21, 23, 24, 25, 133 learners, 126 learning, 25, 62, 66, 73, 74, 78, 79, 81, 102, 104, 111, 115, 123, 126, 132, 143 learning difficulties, 104 learning outcomes, 78 learning process, 66, 111 legislation, 117 leisure, 3, 84 leisure time, 3 lethargy, 10, 126 liberty, 135, 151 life cycle, 121 life expectancy, 31, 51, 52, 83, 89, 90, 91, 92 life experiences, 63 life strategy, 104 lifelong learning, 30 lifestyle changes, 73, 124 lifetime, 57, 76, 77, 130 light, 21, 24, 73 livestock, 108 living conditions, 14, 20 loans, 66 local community, 137 local conditions, 131
171
Index locus, 54, 129 logistics, 59, 116 longevity, 30, 35, 64, 81, 89 long-term illnesses, 1 lung cancer, 12 lung disease, 54
M machinery, 130 magnitude, 91 mainstream society, 102 majority, 18, 55, 79, 89, 103, 117, 119, 120, 125, 126 man, 22, 71, 88, 102, 131, 139, 153 manipulation, 92 marijuana, 103 market share, 131 marketing, 139 Marx, 12, 13, 71, 129, 146, 152 Marxist view, 12 mass, 69, 108, 109, 131 materialism, 13 mathematics, 102 matter, 20, 100, 102, 112, 135, 155 measurement, 89, 154 measurements, 84, 90 meat, 65, 66, 70, 103, 108, 140 media, 125 Medicaid, 151 medical, 6, 7, 13, 14, 15, 17, 18, 26, 31, 34, 54, 56, 59, 60, 61, 66, 73, 75, 76, 79, 84, 85, 87, 88, 90, 101, 104, 130, 135, 139, 148, 149, 153, 154, 161 medical care, 130, 148, 153, 154, 161 Medicare, 146, 149 medication, 7, 8, 59, 60, 61, 78, 113, 137, 141 medication compliance, 141 medicine, 7, 85, 86, 99, 147, 151, 154, 163 mellitus, 157 melt, 65 mental disorder, 156 mental health, 61, 62, 91, 115, 133 mental illness, 1, 60, 116, 118 messages, 76, 78, 104, 113 meta-analysis, 156 metabolic syndrome, 29, 67, 70, 107, 113, 119, 137, 157 metaphor, 3 metformin, 100 methodology, 103 middle class, 54, 67 misconceptions, 78 mission, 21 modelling, 37, 99, 150
models, 11, 14, 16, 24, 25, 27, 34, 35, 56, 64, 71, 73, 94, 101, 102, 120, 124, 131 modern science, 1 modern society, 2, 12, 64, 70, 100, 107, 109 modifications, 100 mold, 163 momentum, 11, 35 monopoly, 61, 73 mood disorder, 164 morality, 65 morbidity, 31, 51, 52, 53, 55, 57, 84, 86, 88, 89, 147, 148, 156 mortality, 12, 52, 91, 92, 154 motif, 3 motivation, 10, 11, 18, 67, 74, 76, 78, 161 multinational companies, 62 multiple regression, 103 multiple regression analyses, 103 music, 120 music therapy, 120 mycotoxins, 163 myopia, 26
N National Health and Medical Research Council (NH&MRC), 159 National Health Service, 153 natural resources, 65 natural selection, 3 negative relation, 45 neglect, 18, 76, 164 networking, 5, 6 neurons, 93 neuroses, 13 New England, 147, 148, 149, 150, 154, 157 New South Wales, 152 New Zealand, 20, 118, 148, 150, 153, 157 next generation, 88, 90 nitrous oxide, 108 nurses, 31, 79, 112, 142 nutrient, 64 nutrients, 107 nutrition, 53, 54, 93, 104, 109, 113
O Obama, 135, 158 Obama, President, 135 obesity, 29, 53, 54, 67, 69, 104, 107, 125, 135, 142, 157, 158 obstacles, 90
172
Index
occupational prestige, 88 oil, 2, 65, 69, 71, 88, 116 old age, 51, 86 operations, 21, 108 opportunism, 21 opportunities, 13, 64, 69, 125, 126 oral health, 91 organ, 52 organize, 130 overweight, 55, 70, 125, 158 ownership, 9, 12, 62, 77, 115
P p53, 11 Pacific, 66 pain, 50, 56, 92, 111, 137, 163 palliative, 53 paradigm shift, 23, 133 paralysis, 90 parenting, 53 parity, 85 participants, 22, 27, 127 pathology, 53 pathways, 88 patient care, 17, 20, 61, 104, 142, 150 penicillin, 3 per capita income, 134 personal benefit, 21 personal control, 132 personal development, 130 personal goals, 15 personal responsibility, 104 personality, 118 persuasion, 12 Perth, 148 pesticide, 103 petroleum, 120 pharmaceutical, 17 pharmacology, 87 Philadelphia, 153, 155 physical activity, 54, 56, 125 physical environment, 87 physical exercise, 64 physical inactivity, 86 physicians, 67, 112 physics, 100, 155 pigs, 65, 108 pilot study, 156 plants, 65, 107 plastics, 64 platform, 21 pneumonia, 12, 52
poison, 70 policy, xi, 6, 9, 24, 34, 51, 86, 89, 147, 150, 151, 152, 157 policy makers, 24 political power, 96 political system, 69 politics, 34, 99, 103, 149 pollution, 64, 65, 91 polyunsaturated fat, 125 pools, 95 population, xi, 1, 3, 29, 30, 31, 34, 35, 44, 50, 52, 53, 54, 55, 57, 59, 67, 74, 76, 81, 83, 85, 86, 87, 88, 89, 90, 91, 92, 93, 94, 95, 96, 97, 104, 105, 107, 108, 109, 116, 118, 119, 124, 126, 127, 129, 133, 134, 141, 142, 148, 149, 150, 152, 153, 154, 155, 157, 158 population group, 50, 83, 127 population pyramid, 30 portfolio, 57 poultry, 108 poverty, 13, 20, 64, 67, 93, 153 power relations, 12, 74 praxis, 13 precedent, 26 premature death, 51, 52 preparation, 16, 62, 115, 129, 130 President, 135 President Obama, 135 preventable mortality, 91 prevention, xi, 1, 3, 7, 11, 12, 14, 15, 19, 34, 35, 50, 52, 60, 71, 74, 76, 78, 84, 85, 93, 95, 96, 99, 104, 119, 121, 124, 141, 159, 161 preventive approach, 124, 125 primary sector, 12, 96 principles, 3, 4, 9, 19, 21, 24, 50, 87, 88, 100, 101, 116, 119, 125, 132 private practice, 161 privatization, 85 probability, 14 problem solving, 62 productive capacity, 70 professional management, 75 professional teacher, 130 professionalism, 131 professionals, 2, 7, 8, 15, 56, 61, 62, 73, 74, 75, 80, 99, 112, 113, 115, 116, 120, 132, 141, 161 profit, 2, 9, 12, 21, 67, 70, 71, 119, 120, 121, 139 profitability, 96 prognosis, 55 project, 5, 9, 10, 11, 24, 26, 27, 35, 37, 44, 124, 159, 160 proliferation, 117, 121 proposition, 83
173
Index prosperity, 96, 146 psychiatry, 164 psychology, 164 psychometric properties, 145 psychosocial factors, 153 psychotherapy, 156 public education, 92 public health, 3, 9, 10, 19, 20, 21, 24, 27, 87, 88, 92, 145, 156, 157, 163, 164 public policy, 6 public sector, 10, 20, 149 public service, 8, 9, 96 publishing, 146, 151, 158
Q qualifications, 66 quality of life, 3, 30, 34, 35, 50, 52, 53, 56, 59, 60, 77, 80, 81, 89, 90, 91, 124, 125, 126, 138, 143, 164 quartile, 45 questionnaire, 16
R race, 102 radiation, 103 rain forest, 66 rate of return, 118 rating scale, 154 rationalisation, 17, 26 raw materials, 71 reading, 141 reality, 13, 14, 21, 22, 23, 24, 25, 69, 89, 90, 101, 102, 112 recall, 35 recognition, 7, 12, 22, 94, 96, 100 recommendations, 133 reconstruction, 19, 97 recovery, 117, 121 recreational, 64 recycling, 71 redistribution, 93 reductionism, 88 reform, xi, 10, 33, 81, 84, 95, 99, 134, 142, 153, 155 Reform, 146 reforms, xi, 60, 84 regulations, 117 reinforcement, 126, 161 relevance, 154 religiosity, 14 remediation, 117, 119, 120
remission, 121 renaissance, 131 repair, 92 research funding, 100 researchers, 83, 89, 100, 126, 163 reserves, 70 residues, 103 resistance, 9, 23 resolution, 14 resource allocation, 18, 86, 89, 97 resources, 10, 11, 12, 19, 20, 22, 25, 26, 27, 31, 33, 34, 35, 64, 65, 69, 70, 71, 74, 84, 90, 91, 93, 94, 95, 96, 104, 108, 112, 124, 134 response, 50, 92, 104, 119, 130, 133, 149 responsiveness, 134 restructuring, 8, 10, 20 retirement, 141 revenue, 89, 117, 118, 119 rewards, 23 rhetoric, 14, 90 rights, 10, 53 risk, 12, 14, 23, 30, 43, 52, 54, 57, 62, 66, 75, 76, 77, 84, 89, 92, 101, 103, 108, 109, 115, 125, 126, 141, 153, 154, 157 risk factors, 12, 52, 54, 55, 57, 103, 126, 141, 154 risk profile, 54 risks, 22, 25, 97, 109, 151 river systems, 142 root, 12, 67, 94 roots, 54, 99, 163 Royal Society, 147 rules, 88, 89, 90, 102, 117 rural people, 17, 126
S safety, 20, 103 salts, 109 savings, 14, 18, 19, 21, 22, 43, 44, 45, 46, 47, 49, 50 school, 13, 53, 60, 77, 99, 102, 104, 109, 119, 125, 126, 142 science, 1, 22, 64, 100, 101, 102, 103, 107, 145, 155 security, 21, 25, 101, 107, 143 sedentary lifestyle, 2, 77 seed, 139 self-control, 129 self-efficacy, 143 self-empowerment, 69 self-esteem, 101 self-interest, 153 self-sufficiency, 56 senescence, 51, 52 sensitivity, 55
174
Index
service provider, 12, 18, 35, 59, 79, 95 services, 5, 6, 8, 9, 11, 12, 15, 16, 17, 18, 19, 20, 26, 33, 34, 35, 37, 55, 56, 59, 61, 64, 66, 67, 75, 78, 79, 81, 83, 84, 85, 87, 93, 94, 95, 96, 111, 113, 116, 120, 129, 133, 134, 148, 149, 152, 153 sexuality, 164 shape, 30, 102 sheep, 65, 108 shortage, 8, 73 shortfall, 95 showing, 35, 39, 41, 50, 103, 107 side effects, 141 signals, 154 signs, 3, 75, 113 simulation, 43 simulations, 44 skin, 103 skin cancer, 103 sleep apnea, 119 smoking, 54, 75, 76, 86, 103, 117, 125, 131 social adjustment, 16 social behaviour, 54, 119 social capital, 6, 14 social care, 146 social category, 54 social change, 55 social class, 13, 93, 94 social construct, 6, 13, 74 social context, 89, 121 social contract, 77, 78 social environment, 76 social group, 19 social justice, 19, 20, 158 social life, 86, 88 social participation, 30 social problems, 67 social sciences, 99 social security, 30 social services, 149 social situations, 18 social structure, 94, 102 social support, 6, 7, 18, 19 social theory, 13, 99 socialism, 12, 14 society, 1, 2, 12, 13, 14, 16, 20, 21, 22, 24, 30, 53, 55, 59, 63, 66, 69, 75, 76, 83, 86, 88, 93, 94, 102, 104, 105, 117, 119, 121, 123, 125, 130, 132, 141, 142, 143, 155 socioeconomic status, 88 sociology, 158 solution, 11, 16, 21, 73, 76, 87 South Australian Centre for Rural and Remote Health (SACRRH), 33
specialisation, 132 specialists, 66 specialization, 130 species, 108 speech, 53 spending, 2, 34, 35, 56, 94, 96, 100, 103, 104, 135 Spring, 145 stability, 152 staff members, 26 staffing, 31, 33 stakeholders, xi, 25, 26, 27, 78, 86 standard deviation, 37, 39, 42 state, 6, 10, 14, 23, 76, 80, 89, 90, 93, 96, 134, 137 states, 6, 118, 134 State-wide Gambling Therapy Service (SGTS), 160 statistics, 39, 42, 132 steel, 151 sterile, 14 stigma, 116 stimulus, 8, 76 stomach, 103 stomach ulcer, 103 stress, 54, 104, 109 stress factors, 54 stroke, 109 structural changes, 9 structure, 7, 9, 10, 11, 15, 20, 21, 30, 78, 95, 102, 107, 126, 161 structuring, 21 stupor, 152 style, 9, 14, 24, 93 substitution, 26, 53, 93 suicide, 64, 137, 164 Sun, 152 support services, 26, 116, 117 surgical intervention, 56, 94 surplus, 14, 71, 120, 129, 130 surrogates, 83, 89 survival, 65, 71 survivors, 3 sustainability, 91, 108, 155 symptoms, 3, 59, 60, 75, 79, 80, 100, 138 synthesis, 14, 155
T tactics, 34 talent, 19 target, 17, 23, 55, 142, 147, 161 target population, 17 taxation, 118, 119 taxes, 30, 117, 121 teachers, 66, 111
175
Index teams, 17, 78, 79, 96, 111, 134, 142, 150 techniques, 1, 43, 75, 105, 123 technologies, 1, 102, 130, 154 technology, 5, 24, 34, 56, 64, 87, 102, 116, 130 territory, 26 testing, 55, 84, 124 tetanus, 52 therapist, 59, 116, 150 therapy, 60, 112, 116, 117, 120, 155, 157, 164 thoughts, 137, 150, 158 threats, 30, 127 time constraints, 104 time frame, 24 tobacco, 2, 64, 116, 131 total costs, 44 trade, 8 trade union, 8 training, 27, 34, 44, 76, 92, 99, 102, 103, 104, 112, 125, 126, 137, 138, 142, 145, 147, 157, 161 transactions, 147 transformation, 24, 85, 134, 146 translation, 79 transport, 69, 108, 129 trauma, 1, 2, 29, 51, 119, 124 treatment, 1, 3, 7, 22, 29, 31, 36, 50, 55, 59, 60, 70, 73, 75, 79, 80, 85, 99, 100, 101, 112, 113, 116, 117, 119, 120, 121, 126, 133, 141, 149, 156, 160, 164 trial, 5, 6, 7, 8, 9, 10, 11, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 25, 26, 27, 95, 99, 145, 147, 152, 155, 157, 158, 159, 161 triggers, 121 tuberculosis, 52 type 1 diabetes, 138 type 2 diabetes, 67, 70, 113, 157
U UN, 108 United, 118, 135, 149, 152, 153 United Kingdom (UK), 29, 69, 149, 151, 152, 153 United States (USA), 74, 118, 135, 149, 153, 157 universal access, 81, 85 universe, 155 universities, 66, 104 urban, 118 urban areas, 118
V validation, 149 variables, 100, 125
variations, 148 varieties, 131 vegetables, 100, 137 vehicles, 11, 26, 69 velvet, 142 venture capital, 25 vested interests, 21, 133 victims, 53 videos, 130 Vietnam, 133 violence, 53, 119 viral infection, 1 vision, 5, 6, 9, 11, 14, 19, 20, 21, 22, 23, 24, 134, 137 vitamin D, 103 volunteer organisations, 111 vulnerability, 10
W wages, 12 walking, 66, 67 war, 3, 67, 71, 109, 116, 117, 133 Washington, 156 waste, 2, 9, 65, 71, 137 water, 64, 65, 69, 70, 71, 92, 102, 107, 131, 133, 140 water resources, 71 waterways, 71 weakness, 9 wealth, 2, 12, 20, 30, 67, 70, 71, 75, 93, 94, 104, 130, 132, 151 wealth distribution, 20 weapons, 76 web, 59, 116, 155 weight loss, 124 welfare, 30, 67, 83 welfare system, 30 well-being, 57, 91 wellness, 74, 99, 123, 124, 133, 152 Western Australia, 118, 148, 159 western developed countries, 1 western societies, 1 WHO, 88, 154 wholesale, 90 wind farm, 143 wine tax, 2 wood, 71 workers, 12, 26, 92 workforce, 29, 31, 147 working conditions, 12 World Bank, 154 World Health Organization, 154 worldwide, 118
176
Index
worry, 157
young people, 78, 93, 125, 126, 127, 151, 157
Y yield, 13, 19
