e-HEALTH
Studies in Health Technology and Informatics This book series was started in 1990 to promote research conducted under the auspices of the EC programmes Advanced Informatics in Medicine (AIM) and Biomedical and Health Research (BHR), bioengineering branch. A driving aspect of international health informatics is that telecommunication technology, rehabilitative technology, intelligent home technology and many other components are moving together and form one integrated world of information and communication media. The complete series has been accepted in Medline. In the future, the SHTI series will be available online. Series Editors: Dr. J.P. Christensen, Prof. G. de Moor, Prof. A. Hasman, Prof. L. Hunter, Dr. I. Iakovidis, Dr. Z. Kolitsi, Dr. Olivier Le Dour, Dr. Andreas Lymberis, Dr. Peter Niederer, Prof. A. Pedotti, Prof. O. Rienhoff, Prof. F.H. Roger-France, Dr. N. Rossing, Prof. N. Saranummi, Dr. E.R. Siegel and Dr. Petra Wilson
Volume 100 Recently published in this series Vol. 99. Vol. 98.
Vol. 97. Vol. 96. Vol. 95. Vol. 94. Vol. 93. Vol. 92. Vol. 91. Vol. 90. Vol. 89. Vol. 88. Vol. 87.
G. Riva, C. Botella, P. Légeron and G. Optale (Eds.), Cybertherapy – Internet and Virtual Reality as Assessment and Rehabilitation Tools for Clinical Psychology and Neuroscience J.D. Westwood, R.S. Haluck, H.M. Hoffman, G.T. Mogel, R. Phillips and R.A. Robb (Eds.), Medicine Meets Virtual Reality 12 – Building a Better You: The Next Tools for Medical Education, Diagnosis, and Care M. Nerlich and U. Schaechinger (Eds.), Integration of Health Telematics into Medical Practice B. Blobel and P. Pharow (Eds.), Advanced Health Telematics and Telemedicine – The Magdeburg Expert Summit Textbook R. Baud, M. Fieschi, P. Le Beux and P. Ruch (Eds.), The New Navigators: from Professionals to Patients – Proceedings of MIE2003 J.D. Westwood, H.M. Hoffman, G.T. Mogel, R. Phillips, R.A. Robb and D. Stredney (Eds.), Medicine Meets Virtual Reality 11 – NextMed: Health Horizon F.H. Roger France, A. Hasman, E. De Clercq and G. De Moor (Eds.), E-Health in Belgium and in the Netherlands S. Krishna, E.A. Balas and S.A. Boren (Eds.), Information Technology Business Models for Quality Health Care: An EU/US Dialogue Th.B. Grivas (Ed.), Research into Spinal Deformities 4 G. Surján, R. Engelbrecht and P. McNair (Eds.), Health Data in the Information Society B. Blobel, Analysis, Design and Implementation for Secure and Interoperable Distributed Health Information Systems A. Tanguy and B. Peuchot (Eds.), Research into Spinal Deformities 3 F. Mennerat (Ed.), Electronic Health Records and Communication for Better Health Care
ISSN 0926-9630
E-Health Current Situation and Examples of Implemented and Beneficial E-Health Applications
Edited by
Ilias Iakovidis European Commission, Directorate-General Information Society
Petra Wilson European Health Management Association
and
Jean Claude Healy European Commission, Directorate-General Information Society
Amsterdam • Berlin • Oxford • Tokyo • Washington, DC
© 2004, The authors mentioned in the table of contents 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, without prior written permission from the publisher. ISBN 1 58603 448 0 Library of Congress Control Number: 2004109513
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Foreword F. Colasanti, Director General European Commission, Directorate-General Information Society During the last 20 years, ICTs (Information and Communication Technologies), have been introduced into manufacturing, commerce and business systems, but they are not yet fully integrated into the services industry and especially in the services of public interest such as the health, social care and public administrations. The proper use of ICTs for data collection, processing and transfer, is the corner stone of productivity gain and re-engineering of all sectors that are information intensive. Health is an information intensive sector. The potential benefit of a fully integrated ICTs based re-organisation is significant, since it will enable not only more efficiency in information processing but also impact on access and quality of care. The European Union has, over the past 15 years, allocated more than 450 Million Euro through its various Research Framework Programmes, for supporting research in areas of medical informatics, health telematics and eHealth. Now, at the beginning of the twenty-first century, this research is bearing fruit and the European market is seeing a growth in eHealth products and services. The eEurope initiative has facilitated two high level eHealth conferences and exhibitions. The eHealth Ministerial Conference in 2003, organised by the European Commission under the Greek Presidency, and the eHealth conference 2004 organised by the Irish presidency in collaboration with the European Commission marked milestones of achievement in eHealth in Europe. The two conferences provided an opportunity to demonstrate a wide range of eHealth solutions in daily use in Europe and to show clear examples of benefits in access and quality of care as well as clear costs benefits. While eHealth is still a growing research and development field, there are many mature results that can be used immediately as key instruments by healthcare authorities, professionals, patients and citizens. The European Union has now demonstrated a clear commitment to beneficial deployment of eHealth systems and services at all levels. The Ministerial Declaration adopted on the occasion of the eHealth 2003 conference has in turn led to the elaboration and adoption by the European Commission of a Communication on eHealth: Making healthcare better for European citizens: An action plan for a European e-Health Area COM (2004) 356 final, which includes an Action Plan aimed at accelerating the beneficial uptake of eHealth solutions. It is my pleasure to recommend to you the exciting examples and best practices of eHealth solutions contained in this book, and to recommend that we all continue to share our European experiences in order to support healthcare systems that respond to all the demands and challenges facing the health sector in the twenty-first century.
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E-Health I. Iakovidis, P. Wilson and J.C. Healy (Eds.) IOS Press, 2004
Introduction: How We Got Here Ilias IAKOVIDIS European Commission, DG Information Society Petra WILSON European Health Management Association Jean Claude HEALY European Commission, DG Information Society
The Pre-history On the road to eHealth we have passed by and encompassed a wide range of technological developments and approaches. The term eHealth, although now quite current in Europe and indeed throughout the world, is still rather new, making its first appearances in the scientific literature around 1999. Its predecessors, however, date back to the 1960s when the concepts of medical informatics and bio-medical computing began to occupy the minds of physicians, computer scientists, mathematicians and others. The 1960s and 1970s saw the development of computing technology for mathematical modelling applied to the healthcare setting and highly specialised tailor made programmes for complex medical decision making support tools. The use of information technology as we know it today, in its plug-and-play, off-theshelf guise started to develop in the late 1970s as health managers, and in particular records clerks, began to understand the potential of computerisation of the huge amounts of records generated in health services delivery. Computer technology (even at its immense 1970s size) was considered an ideal way of keeping track of patients’ notes, bed occupation and planning in a busy hospital. There is not one agreed definition of eHealth. Here we would like to point out that from the European Commission point of view the term eHealth includes the established fields of medical or health informatics, telemedicine and health telematics. Also, it is the personal believe of the authors that medical informatics, and consequently eHealth, is not only about computer applications but also about cognitive, information processing and communication tasks of medical practice, education and research. For example, the work done on classifications of diseases and medical procedures or evidence gathering and medical knowledge representation and dissemination has been done long before computers came around. Silber, in her introductory piece that follows called The Case for eHealth, traces some of these early developments and explores also the definitions of eHealth, noting that “eHealth is the means to deliver responsive healthcare tailored to the needs of the citizen.” Silber provides an in-depth survey of some key applications from the whole range of
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eHealth tools, noting that the Electronic Health Record (EHR) is a fundamental building block of all of these applications. One might say in fact that the EHR has become the holy grail of eHealth – the quest for the fully interoperable, secure, and robust Electronic Health Record which will allow the secure sharing of medical records between care providers across disciplines, institutions and geographic boundaries. The centrality of the EHR is further explored by Thomas Jones who notes, quite simply, that the hazards of not having an electronic medical record have become too apparent to ignore.
Coming of Age The 1990s saw the beginnings of the information technology revolution which, to continue with our image of a road well travelled, took us from the back roads to the super highway. With the development of internet technology eHealth became a reality not only for healthcare practitioners but also for European citizens. It was at this point that the European Union started to invest its Community Research and Technological Development (RTD) budget in ‘healthcare computing’. The first RTD actions in 1989 concentrated on developing computer technology for medical practice through the Advance Informatics in Medicine Programme1. Soon the focus sharpened and the next full programme, which ran from 1991–1994, concentrated its efforts on the development of networks and tools mainly focusing on needs of healthcare professionals. The focus of the Telematics Applications for Health Programme (1994–1998) was on continuity of care, with emphasis on the user’s needs. During the 5th Framework Programme (1998–2002) the vision of the eHealth programme was to create ambient intelligence for health professionals, patients and citizens. More emphasis than ever before was put on the provision of information and personal health systems for monitoring health status to assist people to “stay healthy”. For some years these programmes formed a unique research and development programme in the world. With their focused funding on health telematics research and development, they created a strong European community in the field, demonstrated the benefits of many eHealth solutions and supported EU industry in its drive to become internationally competitive. Many of these research results have now been tested and put actively into practice. These programmes – together with the national eHealth research and deployment activities – have put Europe in a leading position in the use of eHealth solutions such as the integration of the electronic health records in primary care, the deployment of regional health information networks, the use of telemedicine applications in a variety of medical specialisations and use of health (smart) cards by citizens and healthcare professionals. These developments have stimulated a new “eHealth industry” that has the potential to be the third largest industry in the health sector (following the pharmaceutical and medical devices industries) with a turnover of €11 billion. By 2010 it could account for 5% of the total health budget. It has become clear that, at EU level, the Research and Development programmes are not enough to stimulate beneficial uptake of the applications invented. It is a long road from research to implementation, and the role of this book is to contribute to progress 1 Iakovidis I., Health Telematics: 10 years of European Research and Development, Eurohealth, Vol 4, No 1, pg. 11–13, Winter 97/98
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Introduction
along this road. Since many years the European Commission research programme on eHealth is under pressure from Member States to play a greater role in coordinating efforts regarding eHealth deployment and facilitating dissemination of best practices. With the opportunity of the eEurope initiative, the eHealth unit of the Directorate General Information Society, has been able to undertake some significant actions such as organisation of high level conferences2 and the coordination and development of the European Commission’s Communication on eHealth and its associated Action plan3 .
Where are we now? We have now reached the point where eHealth tools have a real maturity and a real place in the health market. As the penetration of personal computers and use of the Internet in Europe increases, a critical mass of users – general practitioners, patients and citizens – is being created for the provision of online health care services. Eurobarometer surveys have shown a steady rise in the rate of Internet connections by general medical practitioners4. The 2002 Eurobarometer survey5 showed that an average of 78% of EU medical general practitioners were online, with – at the highest levels – 98% in Sweden and 97% in the United Kingdom. The use of networks, including the Internet, to deliver patient care is also growing. On average in the European Union of 15 Member States, 48% of medical practitioners use electronic health care records, and 46% use the Internet to transmit patient data to other care providers for the purposes of continuity of care. But a fully interactive use of the Internet to deliver care to patients through the provision, for example, of e-mail consultation (12%) or to enable patients to book appointments online (2%) appears to be only in its early stages. Systems such as these are giving patients more information about their condition and choices, so that they can take more responsibility for healthcare decisions. The March 2003 Eurobarometer survey6 on health information sources shows that 23% of Europeans use Internet for health information and that 41% of the European population considers that the Internet is a good source of information on health. It was decided in 2002 that the eEurope Awards should celebrate the European achievements in this field by awarding prizes for best practice and best examples of use of eHealth tools in European healthcare delivery. In order to obtain a wide range of good practice the European Commission granted a contract to the European Institute for Public Administration to organise public calls for proposals for best practices in eHealth on the occasion of high level eHealth 2003 and eHealth 2004 conferences. The calls were open to representatives of real life eHealth installations. Each proposal had to be submitted by corresponding healthcare user organisation. The call for eHealth 2003 Awards resulted in some 180 applications of which 43 were selected for exhibition, while the call of 2004, 2 eHealth Ministerial Conferences and exhibitions
2003: http://europa.eu.int/information_society/eeurope/ehealth/conference/2003/index_en.htm 2004: http://www.ehealthconference2004.ie/ 3 Communication on eHealth - making healthcare better for European citizens: An action plan for a European eHealth Area http://www.europa.eu.int/information_society/qualif/health/index_en.htm 4 Eurobarometer 2001-2003. 5 Eurobarometer, 2002 http://europa.eu.int/comm/public_opinion/. 6 Eurobarometer 58.0, March 2003.
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which focused on eHealth tools for citizens, resulted in over 100 applications with 32 selected exhibitors7. The exhibitions were organised into broad themes. In this document we highlight mainly the best practices as exhibited in the eHealth 2003 Ministerial Conference and Exhibition. The sections of this publication reflect the themes into which the exhibits were classified.
Section 1. National and Regional Health Information Networks The call for proposals elicited a wide selection of best practices in national and regional networks of which twelve were invited to exhibit. Section 1 includes the descriptions analyses of seven of the applications. Reports of networks in Sweden (Sjunet – The National IT Infrastructure for Healthcare in Sweden); Denmark (MedCom: Danish Health Care Data Network), Norway (Northern Norwegian Health Net) and Finland (North Karelia Regional Chain of Care: Finnish Experiences and UUMA – Regional eHealth services in the Hospital District of Helsinki and Uusimaa) show the high investment that the Nordic countries have made in this field. Building on the early advances in information technology and the needs presented by a dispersed and rural population, the Nordic countries are currently leaders in the use of regional health networks. A particular example may be found in Sweden’s Sjunet which boasts the connection of almost all Swedish hospitals and primary care centres as well as some national authorities. Sjunet is a well developed network which allows for the secure communication and distribution of patient data (including medical images) and medical applications through a specially designed an maintained network which overcomes the insecurities of the internet. Current uses of the network include electronic prescribing and remote radiology. Regional and National networks are not, however, a solely Nordic phenomenon. The description of the Spanish network (Building the regional eHealth Network: The Andalusian experience) and Greek system (HYGEIAnet: The Integrated Regional Health Information Network of Crete) show the development and use of integrated electronic health records to support the needs of both patient and clinician wherever he or she may be. In the case of HYGEIAnet the system had been extended to support the homecare of patients to allow the remote monitoring of a patient in his or her own home by a medical expert.
Section 2. eHealth Systems and Services for Health professionals The early adopters of eHealth tools were the professionals who believed that through them they could improve their service provision. The use of such tools is not, however, without its problems. Äarimaa, in his introductory chapter on the use of eHealth tools by health care professionals highlights in particular the need to establish standards and an agreed common language to ensure an interoperability of systems. He goes on to look also at non-technical needs, including the legal and organizational issues related to the supervision of eHealth services provision and the legal liability of those who practice eHealth. 7 www.e-europeawards.org
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In describing the Oxford Clinical Intranet, Kay and colleagues show in a very practical way the gains which may be made in using intranet and internet technology to share patient information. The chapter addresses many of the needs outlined by Äarimaa, in particular the security and access control elements which are so vital when real patients’ data are shared across internet gateways. The system demonstrates the efficiency and effectiveness gains generated by eHealth tools using hyperlinking of patient records, local knowledge bases and remote knowledge bases. On a more technical level Cinquin and colleagues (SURGETICA at Grenoble: From Computer Assisted Medical Interventions to Quality Inspired Surgery) explore the tremendous opportunity eHealth tools provide for the reduction of invasive surgery - its potential to realise minimally invasive surgery with all its associated benefits for the patient. They describe, among other applications, the possibility of using a 6-D tracked ultrasound probe to locate the position of a pericardial effusion in order to allow surgeons to repair a pericardial puncture with minimum disturbance to the patient whilst maintaining excellent visual guidance of the needle. The public health potential of eHealth applications is explored by Balas and colleagues who examine the extent to which intelligent eHealth networks were a key tool in responding to the challenges posed by the Severe Acute Respiratory Syndrome (SARS)8 Balas notes the potential of eHealth tools in the coordination of prevention and chronic care initiatives.
Section 3. Empowering Patients and Citizens in Management of Health and Well Being It is important to remember that eHealth tools are not just about technical solutions for doctors or administrative tools for managers. One of the real growth areas of eHealth is, in fact, tools for use by the citizen in the management of his or her own health. The way in which eHealth tools are used by the citizen may be grouped into three broad types: tools for accessing information and advice, tools for assisting citizens in dealing with health services administration (appointment booking, prescriptions etc) and devices for facilitating homecare of patients through remote monitoring and assistance. Section 3 on Empowering Patients and Citizens includes a presentation of the development of one of Europe’s first national internet based health advice and information services. While many individual doctors and patient groups had already started to provide such services NHS Direct Online has, since its launch in 1998, become the largest provider in the world of direct access healthcare using modern communication technologies. NHS Direct provides 24x7 access to clinical advice and information, providing self care guidance or referral to appropriate health care services. It comprises information pages on the internet as well as a nurse-led service which handles around 6 million calls a year, projected to rise to 16 million a year by 2006. However, health information on the internet is not provided solely by such well funded public bodies as the UK’s National Health Service, a huge amount of health information on the internet comes from small organisations and individuals as well as huge multinational pharmaceuticals companies. Health information on the internet ranges from per8 SARS – a respiratory disease of unknown etiology that apparently originated in mainland China in 2003; characterized by fever and coughing or difficulty breathing or hypoxia which can be fatal.
Introduction
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sonal accounts of illnesses and patient discussion groups to peer reviewed journal articles and clinical decision support tools. It has been noted that it is difficult if not impossible to define a single quality standard for such a disparate collection of resources furthermore, different users may have different criteria for quality. Patients and caregivers may want simple explanations and reassurance, whereas healthcare professionals may want data from clinical trials.9 Celia Boyer of Health on the Net in her chapter on Realising the Potential of the Internet for Health and Medical Information introduces readers to the concept of using quality criteria and codes of good conduct for helping internet users sort good health related information from bad, and the potential of using automated systems for information retrieval and dedicated health searches engines. Exploring the potential of eHealth tools to assist citizen’s in their administrative interactions with health service providers, Wagner and colleagues describe a booking system in operation in the South East London area which allows a GP to make an appointment directly with a consultant without a series of referral letters. The system thereby greatly shortens the administrative burden and allows the GP to consult directly with the patient about appropriate dates and times. The Slovenian National Health Insurance Card System offers another example of enhanced citizen empowerment in the healthcare setting through eHealth applications. In this case the tools facilitates sharing of medical record and administrative tools combining both compulsory and additional voluntary insurance schemes in one card, while the Swedish Sustains example shows how a patient can be an active partner in her healthcare with the use of an internet based medical record. The final three chapters of the section on Empowering Patients and Citizens demonstrate the extent to which eHealth tools can already be used to support patients in their own homes. Papazissis provides an introduction to the concept of homecare, noting that patients recover quickest when within their own space and that therefore every effort should be made to exploit the possibilities eHealth offer to allow patients to return to that setting as long as possible. The Boario Home Care Project provides a very well developed example of the types of care which can be provided at a distance to cardiac patients in order to allow them to stay in their homes whilst receiving ECG monitoring via telephone lines, as well as handheld devices which patients apply when they feel palpitations. While DITIS case study from Cyprus shows how the use of GSM and GPRS mobile telephony technology can be used to support chronically ill cancer patients in their own homes.
Section 4. Industrial and Standardisation Issues eHealth industry is one of the stakeholders on which beneficial deployment heavily depends. One of the necessary conditions of successful deployment is commitment and investment in eHealth by the industry. As mentioned before, the potential for the market is there since it is expected that the health sector may spend 5% of its budget (currently close to 3 trillion Euro worldwide) on eHealth systems and services . The industry needs to see not only financial prospects so they can invest in the development of the eHealth solutions, but also clear rules of the market including regulations and stan9 For an introductory overview, see: Gretchen P Purcell, Petra Wilson, and Tony Delamothe, The quality of health information on the internet BMJ, Mar 2002; 324: 557 - 558
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dards. The overview of the standardisation efforts in EU is given in a paper by George de Moor. A discussion of the potential benefits of eHealth industry, emphasising in particular the increased quality control and reduction of errors (the contingent costs of errors), is provided by Erich Reinhardt writing on the Economic and User Perspective. Industrial perspectives and specific experiences are also briefly discussed in a paper by Stan Smits. The eHealth 2003 Conference and Exhibition sought to achieve two main objectives: to show-case European best practice in eHealth and to demonstrate that eHealth can be cost effective, can effectively contribute to improving access to care and can raise the quality of care that patients receive. In order to achieve the latter each applicant was asked to present evidence on the three points and to seek to quantify any cost benefits that were achieved through the use of the eHealth tool or application. The study of ACCA (Association of Chartered and Certified Accountants) and MEDCOM – The Danish health care data network shows concrete example and figures regarding savings achieved in Denmark by using the e-referral system. The catalogue of the Exhibition demonstrates a wide range of assessments of benefits and shows that most systems, whilst demanding investment, will yield real benefits. If the true benefits of eHealth, as demonstrated in the chapters of these proceedings are to be realised the answers lie not only in continued technological developments and sound managerial policies of implementation but also in a modernisation of the legal and normative standards to facilitate interoperability of applications at local, regional national and European levels. The final chapter “The Road Ahead” is therefore given neither to an economic analysis nor to a technological exploration, but instead to an evaluation of the challenges faced by standardisation bodies and the importance of enhancing the collaboration between such bodies and the industries which develop the applications. It explains the rationale behind the new European Commission Communication3 on eHealth and the choice of topics in the Action plan that aim at awareness of benefits and the acceleration of beneficial deployment of eHealth systems and services.
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Acknowledgments We would like to express our appreciation to Bénédicte Vasseur, who gave many valuable hours to the production of this collection.
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Contents Foreword F. Colasanti
v
Introduction: How We Got Here I. Iakovidis, P. Wilson and J.C. Healy
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Acknowledgments
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Setting the Scene The Case for eHealth D. Silber
3
National Infrastructure for eHealth: Considerations for Decision Support T.M. Jones
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Ministerial Declaration
35
1. National and Regional Health Information Networks Sjunet – The National IT Infrastructure for Healthcare in Sweden G. Malmqvist, K.G. Nerander and M. Larson
41
Building the Regional eHealth Network. The Andalusian Experience F. Vallejo Serrano
50
MedCom: Danish Health Care Network H. Bjerregaard Jensen and C. Duedal Pedersen
59
HYGEIAnet: the Integrated Regional Health Information Network of Crete S. Orphanoudakis
66
Northern Norwegian Health Net L.K. Johannessen, T.S. Bergmo and E. Appelbom
79
North Karelia Regional Chain of Care: Finnish Experiences P. Itkonen
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UUMA Regional eHealth Services in the Hospital District of Helsinki and Uusimaa (HUS) K. Harno
101
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2. eHealth Systems and Services for Health Professionals Telemedicine – Contribution of ICT to Health M. Äärimaa
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SURGETICA at Grenoble: From Computer Assisted Medical Interventions to Quality Inspired Surgery P. Cinquin, J. Troccaz, G. Champleboux and S. Lavallee
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The Oxford Clinical Intranet: Providing Clinicians with Access to Patient Records and Multiple Knowledge Bases with Internet Technology J.D.S. Kay, D. Nurse, Ch. Bountis and K. Paddon
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The Contribution of ICT to Health: The Andalusian Health Network J.A. Cobena Fernandez
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From SARS to Systems: Developing Advanced Knowledge Management for Public Health E.A. Balas and S. Krishna
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3. Empowering Patients and Citizens in Management of Health and Well Being Realizing the Potential of the Internet for Health and Medical Information C. Boyer
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NHS Direct Online: A Multi-Channel eHealth Service B. Gann
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Area Wide Electronic Booking: A Revolution in the Management of Health and Well Being R. Wagner, S. Miller and A. O’Shaughnessy
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Slovene National Insurance Card System: Connecting Patient and Health Care M. Suselj
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Sustains - Direct Access for the Patient to the Medical Record over the Internet B. Eklund and I. Joustra-Enquist
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Advanced Technology Permits the Provision of Advanced Hospital Care in the Patients’ Homes E. Papazissis
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Boario Home Care Project S. Scalvini, M. Volterrani, A. Giordano and F. Glisenti
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User Perspective of DITIS: Virtual Collaborative Teams for Home-Healthcare B. Pitsillides, A. Pitsillides, G. Samaras, P. Andreou, D. Georgiadis, E. Christodoulou and N. Panteli
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4. Industrial and Standardisation Issues eHealth 2003: The Economic and User Perspective E.R. Reinhardt
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Introduction to Industrial Perspectives: eHealth Systems, Past Experiences and Future Prospects S. Smits
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e-Health Standardization in Europe: Lessons Learned G.J.E. De Moor, B. Claerhout, G. Van Maele and D. Dupont
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The Cost Benefit of Electronic Patient Referrals in Denmark: Summary Report S. Cannaby, D. Westcott, C.D. Pedersen, H. Voss and Ch.E. Wanscher
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The Road Ahead I. Iakovidis, P. Wilson and J.C. Healy
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Author Index
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Setting the Scene
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E-Health I. Iakovidis, P. Wilson and J.C. Healy (Eds.) IOS Press, 2004
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The Case for eHealth Denise SILBER Basil Strategies
1. Introduction The Case for eHealth presents an overview of existing eHealth results, based on publications and data, found on the PUBMED website, and in the records of the Directorate General Information Society eHealth unit. The EC has been supporting health informatics and telematics for nearly 20 years. This work confirms that: • eHealth is the single-most important revolution in healthcare since the advent of modern medicines, vaccines, or even public health measures like sanitation and clean water. • Numerous eHealth implementations exist in Europe. • European expertise can satisfy the increasing demand for more and better healthcare services worldwide. • Although new technologies are widely used by European healthcare professionals and consumers, information about the value of eHealth in improving the quality of care is little known beyond eHealth circles. • It is urgent that a more informed dialogue between policymakers, healthcare professionals, and citizens begin.
2. What is eHealth? Why is it important? For some people, the term “eHealth” still conjures up a reference to the dotcom bubble and self-help medicine. eHealth as a field is much broader, older, and serious. The first computer applications for health and medicine were developed in the 1960s, but the results were reserved to highly-specialized publications, generally read by other. . .informaticists. In fact, eHealth describes the application of information and communications technologies (ICT) across the whole range of functions that affect health. It is the means to deliver responsive healthcare tailored to the needs of the citizen. eHealth is an end-to-end process, from birth registries to “cause-of-death” registries, from prevention and screening to follow-up, from emergency intervention to homecare, whatever the cultural or national context.
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D. Silber / The Case for eHealth
• The patient uses eHealth when s/he seeks information online, uses self-management tools, participates in electronic communities, requests a second opinion. • Primary Care includes the use of ICT by the Primary Health Care Team (PHCT) for patient management, medical records and electronic prescribing. Healthcare professionals can also call upon eHealth for their Continuing Medical Education. • Home Care includes care services which are delivered by home care professionals via telecommunications to a patient in the home • Hospitals may call upon ICT for scheduling logistics, patient administration, laboratory information, radiology, pharmacy, nursing, electronic messaging between the hospital and other healthcare actors for communication of clinical and administrative data, and telemedicine and second opinions, in any specialty. The Electronic Health Record (EHR) is a fundamental building block of all of these applications. The EHR allows the sharing of medical records between care providers across disciplines, institutions and geographic boundaries. Entire areas of “traditional” healthcare depend on informatics. Hospital laboratories are heavily computerized with many analyses, especially in biochemistry and hematology, being fully automated. Modern imaging techniques depend on informatics. Prescription of medications without computer assistance is source of significant error and excess cost. Computer-aided diagnosis, which began more than 40 years ago, is now recognized as indispensable in rare disease and in day-to-day quality of care. Advances in telecommunication and miniaturization technologies support both professional-to-professional high-bandwidth telemedicine operations, and low bandwidth personal applications, enabling the individual to take greater responsibility in self health-management. New markets have opened in personal sensor technology for integration into fixed and mobile consumer electronic products; communications infrastructure for disease prevention and health maintenance; centralized diagnostic services; evidence-based medicine and drug databases. According to Marion Ball et al, in Health Informatics: Managing Information to Deliver Value” [1] “we are beginning to gather proof that informatics can deliver value and improve health” in disease management, teleHealth, patient safety, and decision support. The authors cite: • A diabetes program whose enrollees remained unhospitalized over a four year period with annual net savings of $510,133 • A congestive heart failure program involving telemonitoring and patient education which reduced the 30-day readmission rate to zero and cut the 90-day readmission rate by 83% • A 4-month clinical trial of 200 patients in intensive care units, in which the addition of telemedicine coverage to normal staffing reduced patient mortality by 60%, complications by 40%, and costs by 30%. Ball et al cite the groundbreaking Institute of Medicine’s (IOM) publication “To Err is Human: Building a Safer Health System”. This report was the first to develop awareness of the “staggering statistics on medical error.” 90,000 deaths, according to the IOM, are due each year to preventable medical errors in the US. The report indicates that decision support systems can cut adverse events by 55%, and that the prevention of adverse drug events saves over $4000 per event. To err is human concludes that “a computerized sys-
D. Silber / The Case for eHealth
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tem costing $1 to 2 million could pay for itself in three to five years, while preventing injury to hundreds of patients.” Unfortunately, no eHealth assessment methodology is universally accepted. Experts criticize the scope of research, the choice of criteria, basic study methodology. We do not have authenticated, comparable data regarding the results of eHealth implementations. We know more about the barriers to adoption of eHealth than the keys to its widespread diffusion. We hear that consumers surf the net and find dangerous information, that time spent “behind a computer screen” is patient time lost for the professional, that no electronic system can protect the security of personal data, and that technology is expensive and ineffective. The barriers are cultural, economic, political and informational, ie, largely human resistance to change. Yet, the quality management of information is indispensable to the quality of healthcare. No amount of compassion will save a patient whose prescription is wrong, whose condition is undiagnosed, who does not have regular access to care. eHealth cannot cure healthcare of all of its current ills, but it can significantly contribute to improvement, if the introduction of eHealth accompanies an understanding of the underlying healthcare processes.
3. Which European eHealth initiatives are “state of the art” What is a quality eHealth implementation? There is unfortunately an evaluation paradox. Evaluation tends to be done during a trial or pilot period. The more large-scale an implementation, the more costly it is to measure results or to include a control group. The system simply “is”. 33 European implementations nonetheless deserved inclusion in this publication. We artificially divided the examples into categories based on the “driver” of the operation: the consumer, the individual professionals, a region or a nation, in order to facilitate the analysis.
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Consumer a) Rare Diseases Rare diseases are very patient-centric diseases and highly compatible to the use of ICT or eHealth. Given the number of such diseases, they collectively represent millions of Europeans. OrphaNet OrphaNet is a European multi-lingual portal, devoted to orphan or rare disease, and supported by the French national health research institute, INSERM and funds from the EC. OrphaNet’s online encyclopedia offers information on over one thousand of the three thousand rare diseases, including data on biology laboratories, expert consultations, patient associations. According to Ségolène Aymé, French geneticist and founder of OrphaNet “Only 100 rare diseases are taught in medical schools. Rare disease patients have, for many years, worked directly with researchers, generally knowing more about their particular disease than the average health professional. Any solution that can shorten the time necessary to diagnose a case, enter a patient in a trial, or identify treatment, significantly diminishes costs to the health system. ICT has the capacity to facilitate the matching of the right patient to the right professional, to extend health networks to a greater number of centers and to facilitate access to the results. Information technology was first applied to rare diseases over 30 years ago, through diagnostic decision software. Two diagnostic decision systems are available today free of charge, OrphaNet and the London Dysmorphology Database.” b) General portals Sundhed.DK Sundhed.DK, meaning “health,” is the name of a non-profit Danish health portal created by the Danish Pharmaceutical Association. The Association’s objective is to create an alternative to the purchase of prescription drugs online through epharmacies. The website allows patients to use the Internet to renew prescriptions at a physical pharmacy and to book doctors’ appointments. These services are also available in Denmark through many physicians’ practice homepages. Sundhed.DK does not run ads or accept manufacturer sponsorships. According to industry estimates, Sundhed.DK captured 40% of Denmark’s 125 million hits in healthcare use of the Internet in 2002. Its typical consumer user is a female with responsibility for healthcare decisions in her family. The portal contains more than 3,000 articles. 40 medical editors answered around 1,000 questions per month in 2003. [5]. NHS and NHS Direct In the UK, the NHS is the abbreviation for the National Health Service as a whole. The NHS Information Authority led program, NHS Direct Online, and NHS Direct work as a triumvirate. The first two are websites, (NHS.UK and NHS Direct Online), and NHS Direct is a call center. These three resources work together to facilitate consumer access to proper information and care. The NHS Direct Online website provides health information online and access to a 24-hour nurse helpline. These services were initiated in 1999. Six million people have
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accessed NHS Direct website in approximately two years. There were 500,000 visitors in January 2003. NHS UK established its data-driven website in July, 2000. The site gives information on over 70,000 physical NHS sites, providing health services to the public. This information is used by NHS Direct call centers when dealing with consumer enquiries. Public information kiosks were also introduced in the year 2000 by NHS Direct. 200 touch screen, printer-equipped, wheelchair-accessible kiosks were placed in high traffic locations. Vardguiden Stockholm County of 1.8 million inhabitants, deploys a health information portal, called Vardguiden, since February, 2002. This program offers information about healthcare services, a help desk, and secure communication of questions or messages to the patient’s healthcare professional. There were 55,000 users per month in 2003, and 12,000 who access the information by telephone. More than 800,000 answers were provided. The corresponding time saved is evaluated at € 1.25 million per year. c) Mental health services NetDoctor (depression) The for-profit consumer website NetDoctor operates, online forums for depressed patients in several European countries. According to company data, 28,000 users were registered in these forums, across the UK, Sweden, Denmark, and Austria in 2003. A study by H. Agrell [6] et al of the Karolinska Institute examined the Swedish NetDoktor Depression site. Agrell’s study measured how individuals are affected by the active use of an Internet community site dealing with depressive disorders. The authors proceeded via an Internet-based survey. 219 individuals responded. 114 were active members of the community. Amongst the subgroup of 30% of participants who had not initially revealed their depression to anyone beyond the website, 80% of those did seek help, thanks to the advice of the group. The study conclusion is that “the Internet seems to have the potential to provide an important function for depressed people.” APHA (crisis counseling) The Finnish early-stage counseling and crisis portal was established in 2001. It is maintained by 15 organizations working in mental health, addiction, children’s welfare, domestic violence, and other public health subjects. Consumers are directed to an appropriate service, based on the need they express. In January, 2003, there were 3022 unique users of this Finnish-language site. d) Patient information CancerNet G Quade et al of the University of Bonn [7], examined the results of CancerNet online, which was established in 1994, as a website designed to enhance the patient-physician relationship. CancerNet, which provides access to the National Cancer Institute guidelines, is offered in English, Spanish, and German for patient information. Since 1994, nearly 2 million users, including more than 200,000 physicians, have consulted the site. 95% rated the service excellent or good.
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e) Quality seals The desire to evaluate the quality of health websites has generated nearly 200 papers by researchers in Austria, Denmark, Finland, France, Germany, Hungary, Ireland, Italy, Norway, Poland, Spain, Sweden, UK. Authors often seem to seek to demonstrate the dangers of health websites to the citizen. We noted with interest the research [8] of Howitt et al, evaluating 90 physicianmanaged websites in the UK. The median time elapsed since the last update was 249 days. The doctors’ qualifications were absent in 26% of sites. The source of medical information was given in only 10% of 109 topics. Health on the Net (HON) The best known and oldest of the quality seals for health websites is proposed by Health on the Net since 1996. More than 3000 websites worldwide adhere to the HONCode. The HONcode has been shown to be one of the major accuracy content indicators in a study conducted by Fallis et al. [9] Adherence to the HONcode means that the website includes the author’s credentials, the date of the last modification with respect to clinical documents, ensures the confidentiality of data, indicates sources of funding, its advertising policy, and clearly identifies any advertising as such. HONcode is free of charge to the website and would eliminate most quality of information defects. The UK Consumers’ Association 2003 Policy Report [10] provides one of the most complete recommendations regarding the quality of consumer healthcare information. This is the first policy paper in which Web-based quality criteria are recommended for application to all media. a) Online databases and registries As more and more healthcare databases move online, they enable professionals and citizens to collaborate efficiently across boundaries, whether local, regional, national, or worldwide. FINPROG A Finnish web-based system for individualized survival estimation in breast cancer was developed by researchers at the Universities of Helsinki and Tampere. According to Lundin and Lundin, the researchers, “this web-based system could be applied to a variety of diseases.” FinProg generates survival curves dynamically. Researchers can obtain survival estimates based on actual and not inferred data. Users can enter any prognostic factor data and explore the database. The data base is intended for consultation by physicians, but access is not restricted. All personal identification information has been deleted. “The source for the survival data is a Finnish nationwide series of women with breast cancer. There are 2842 total patients in the Finprog series. 91% of all breast cancer cases diagnosed within the selected regions and the chosen time interval could be included in the database, which would suggest that the series is relatively unbiased. The median follow-up time for the unrelapsed patients is 9.5 years.” [11] Pediatric European Cardiothoracic Surgical Registry The European Congenital Heart Surgeons Foundation, established in 1992, created the European Congenital Heart Defects Database for the purpose of collecting outcomes data on congenital heart surgery procedures across Europe. Since January 2000, Cardiothoracic Surgical Registry, has officially operated from the Children’s Memorial Health Institute in Warsaw, Poland, under the auspices of the Eu-
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ropean Association for Cardio-Thoracic Surgery. Participation in the database is free of charge through the Internet. “In April 2000 the International Congenital Heart Surgery Nomenclature and Database Project published a minimum dataset of 21 items and lists of 150 diagnoses, 200 procedures, and 32 complications, as well as 28 extracardiac anomalies and 17 preoperative risk factors. As of March 2001, 84 cardiothoracic units from 33 countries had registered and data on almost 4000 procedures have been collected.” [12] TOXBASE The National Poisons Information Service (NPIS) in the UK has six regional offices. In 1999, the NPIS’s existing database TOXBASE was transferred to the Internet and made available to health professionals working throughout the NHS. TOXBASE holds information on 14,000 agents including pharmaceuticals, chemicals, household products, plants, . . . Pharmaceuticals account for 73% of accesses to the database. Results of the transfer were reported in Web-based information on clinical toxicology for the United Kingdom: uptake and utilization of Toxbase. [13] Enquiries to TOXBASE were found to be more than 3,4 times more frequent on the Internet, than by telephone. Monthly use of the telephone service showed a gradual decrease as TOXBASE usage increased. The risk of telephone queuing was also reduced. Whereas most telephone inquiries came from primary care, the major TOXBASE users were accident and emergency departments. Referrals to senior clinical staff increased. A survey conducted across the UK confirmed that the system meets users perceived clinical needs. DN Bateman et al concluded that computer information systems are alternative tools to the telephone for the provision of poisons information. Birth and other registries In Medical birth registry—an essential resource in perinatal medical research [14], LM Irgens reports on the Norwegian component of EUROCAT, the European network of population-based registries for the epidemiologic surveillance of congenital anomalies. More than 900,000 births per year in Europe are surveyed by 36 registries in 17 countries of Europe. The Nordic Association of Birth Registries is introducing non-paper notification in 2003. Jaspers et al of the Department of Medical Informatics, Netherlands Cancer Institute report on the benefits of a national computerized pediatric cancer registry on late treatment sequelae in The Netherlands. [15] b) Electronic Health Record (EHR) EC Framework programs The electronic health record (EHR) is digitally stored clinical and administrative health care information about an individual’s lifetime of health experiences, for the purpose of supporting continuity of care and education and research, while ensuring confidentiality. Requirements of an EHR were formulated, as of 1991, in the European Union R&D Program. An EHR System manages EHR information. The system can be a small group of PCs, a hospital information system, or a group of hospital and primary care systems in a regional network. EHR systems for general practitioners have so far achieved the highest penetration. They are popular in countries with a strong tradition of primary care such as United Kingdom, Ireland, Netherlands, Denmark.
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Management of Medication and Dosage An important feature of the EHR is its capability of supporting the determination of the drug dose. As Walton et al confirm in Computer support for determining drug dose: systematic review and metaanalysis, [17] “many drugs have a narrow ‘window’ in which therapeutic benefits can be obtained at a low risk of unwanted effects.” Yet, in one study cited by Walton, it is noted that “82 of 150 hospital doctors were unable to calculate how many milligrams of lignocaine were in a 10 ml ampoule of 1% solution.” The authors assessed the benefits of computer systems designed to help doctors determine the optimum dose of drugs. 17 controlled clinical trials were included, based on the criteria of the Cochrane Collaboration on Effective Professional Practice. “Eleven studies examined change in the drug dose when computer support was used and seven found significant changes, involving both increases and decreases in initial and maintenance doses. Four of the six studies which measured unwanted drug effects found significant reductions in association with computer support.” Two studies reported economic data, including reduced cost of treatment and reduced hospital stays. A 2002 publication in Quality and Safety in Health Care, [18] found that more than 86% of mistakes in family-care offices are administrative or process errors: filing patient information in the wrong place, ordering the wrong tests, prescribing the wrong medication. However, 10 mistakes led to a hospital admission and one to a patient death. This study, performed by the observation of 42 physician volunteers over a 20-week period in the year 2000, is the first to focus on errors that occur outside the hospital setting. EHTEL According to Living at home, healthcare in the home, published by EHTEL, while the same technology is available in both countries, 75% of doctors’ prescriptions are transmitted electronically in Denmark and only 10% in Sweden. The Swedish national figure ranges from Stockholm with only 2% to Norbotten with 95%. c) EHR systems in hospitals The hospitals with good examples of EHR systems have been running for many years and have begun to confirm cost savings through greater efficiency and improved care. As the technology evolves and some standards emerge, EHR installation in European hospitals is increasing. Denmark, Finland, Norway, and Sweden support regional and national health telematics networks, These EHRS are shared within hospitals, between hospitals, between hospitals and primary care centers or individual physician’s offices. COHERENCE (European Hospital Georges Pompidou – HEGP, France) COHERENCE stands for “Component-based Health REference architecture for Networked CarE”. The opening of HEGP in July 2000, was the result of the biggest hospital consolidation in Europe. Three technically obsolete hospitals were closed, and HEGP was allotted a budget lower than the sum of the 3 predecessors. 6% of this initial budget were attributed to IT for development and 1.8% of annual operating costs for maintenance. The IT objectives for HEGP are: to control costs through organizational innovation, to improve the quality of the patient admission process, to decrease and redirect the number of beds. Over 140,000 patients have participated in the EHR system since opening day. Ubiquitous access to a lifelong multimedia EHR is achieved through the use of 1800 fixed and mobile computers with wireless transmission. Transmission of secured eMail to the patients is provided through “La Poste” Internet eMail secured transmis-
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sion services. Medical information is recorded at bedside and prescriptions distributed to technical platforms together with a minimum medical file. The appointment system, shared by 96% of the units, generates a personalized care plan, which can be followed by authorized professionals on any of 1800 computers. Waiting lists are reduced; conflicting appointments are highlighted; investigations are documented. Patients are re-assured by the quick entrance procedure at one of 22 decentralized access points and the physician’s access to previous history. The HEGP brings all units of a same specialty together geographically, (for example, medicine and surgery) and merges traditional units into 7 major cooperative centers. Compared to its predecessors, global operating costs at HEGP are 17 million euros lower, despite the 15 million euro increase in medical costs for diagnosis and treatment. HEGP offers a 0.9 increased nursing personnel bedside presence and a 1.0 day reduction of the mean length of stay. d) Electronic libraries and evidenced-based medicine information services The demand for greater access by professionals to evidence-based medicine (EBM) is growing, despite the controversy over the definition of good evidence. Libraries are increasingly implementing electronic distribution of documents, but not all practice situations enable healthcare professionals to use such documents. In Information management and reading habits of German diabetologists: a questionnaire survey, [19] Trelle notes that the need for evidence-based medicine has not reached German diabetologists. According to survey results of 461 professionals, 90% had convenient access to the Internet, MedLine or EMBASE, but only 45% searched databases regularly (three searches per month). The Kostoris Medical Library The Paterson Institute for Cancer Research is one of the largest cancer research laboratories in the UK, with over 200 researchers, fellows, students, administrators. The Institute is part of the Joint Academic Network, benefiting from a super-fast connection and large bandwidth. Electronic mail is the primary form of communication. In “Biomedical information @ the speed of light: implementing desktop access to publishers’ resources at the Paterson Institute for Cancer Research in Manchester,” [20], the systems librarian explains how every Thursday at midnight, a list server in Massachusetts delivers an electronic table of contents messages containing the details of the latest edition of the New England Journal of Medicine, complete with hyperlinks to the full text of the content online. The Kostoris Medical library initiated an etoc (or table of contents alert) service in 1998. The institute saves up to 21 days per publication, compared to the arrival of the paper journal. Rouen University Hospital CISMeF is the French acronym for Catalog and Index of French-language health resources. This 60,000+ page Web site, which receives 15,000 queries daily, was created by the Rouen University Hospital in 1995, and is well known among French physicians. CISMeF describes and indexes quality French-language health resources available on the Internet. CISMeF uses the Medline bibliographic database, MeSH thesaurus, and the Dublin Core, offering indexation by medical specialties and alphabetically. In Cost effectiveness of a medical digital library, [21] Roussel et al at Rouen University Hospital in France assessed the cost impact of modifications to the digital library
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and found that: “When electronic versions are offered alongside a limited amount of interlibrary loans, a reduction in library costs was observed.” National Library of Medicine The National Library of Medicine produces Medline, which is available online since 1997. Elliot R. Siegel, the Associate Director for Health Information Programs Development, presented Strategic Approaches to Web Evaluation at the ICSTI Conference on Scientific Information in Stockholm, June, 2002. This paper confirmed that the US government health websites are visited by more non-Americans than Americans. With 6 million global unique visitors per month and 3.2 million Americans, the NIH websites are far and away the most visited health sites in the world. South Cheshire Local Multidisciplinary Evidence Center (LMEC) In a 1998 report which confirmed that primary and community care staff in the UK had limited access to library and information services, the recommendation was made that Local Multidisciplinary Evidence Centers (LMEC) be created to improve the situation. JC Howard et al, present the results obtained in South Cheshire between 1998 and 2000 [22]. The library catalogue was automated and included on the website as were local directories, clinical guidelines, and training opportunities. Staff monitored use of the website, library membership, and requests by LMEC users. Evaluation was carried out by a survey of 760 staff in February 2000. Numbers were disappointing but people who used the service were enthusiastic. 115 practice staff joined the library. Requests for books increased from 5 to 25 per month. Article requests increased to 35 per month. Website hits increased from an initial 150 to 300 per month. The bibliographic databases and clinical guidelines were found to be the most useful resources on the website. They concluded that the study “demonstrates the need for a greater investment in communicating to a staff about the service.” NeLH National electronic Library for Health (UK) The purpose of the NeLH is “to provide health professionals with a core knowledge base of accredited and evaluated information” [23] The NeLH is based around a central website including 70 information resources, obtained through partnership with the NHS Libraries, NHS Direct Online, and the electronic Library for Social Care. According to the NeLH, there are no other free, single-source, evidence-based knowledge resources available to and focused on clinical staff. One of the quantifiable benefits is the ability to purchase resources centrally. In February 2002, the first online continuing professional development modules were launched on the NeLH website, as well as a breast cancer Web resource in collaboration with NHS Direct online, and a diabetes knowledge base for NHS professionals. NeLH provides evidence-based analysis of the news reports regarding new cures and techniques, within 48 hours of publication. The website achieved 2.7 million hits in April, 2002. A cost-benefit analysis concluded that the investment in evidence-based content offer cost savings in terms of staff time at between £3 million and £12 million per year. e) Distance education for professionals According to Grimson et al in Dublin, “the need to participate in continuing professional development or continuing medical education, is considered to be at the very least
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highly desirable and more likely mandatory. The use of ICT is one means by which this can be facilitated in a timely and cost-effective manner.”[24] Their comment is supported by Kronz et al’s paper whose title provides the conclusion: A Web-based tutorial improves practicing pathologists’ Gleason grading of images of prostate carcinoma specimens obtained by needle biopsy: validation of a new medical education paradigm. [25] Johns Hopkins In this first large-scale international study evaluating the use of a web-based program to educate widely-dispersed physicians, the Johns Hopkins Hospital team tested webrecruited international pathologists’ ability to evaluate 20 images of prostate carcinoma specimens, before and after exposure to 24 tutorial images. 643 practicing pathologists participated in this free Web-based program. Pre-tutorial score correlated