SPRING SESSION CPR(13)7PART2
(Strasbourg, 26-28 March 2007) 15.01.2007
STANDING COMMITTEE
COMMITTEE ON SOCIAL COHESION
CHAMBER OF REGIONS
E-health and democracy in the regions
Rapporteur: Mehboob KHAN, United Kingdom
Chamber of Regions, political group : SOC
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EXPLANATORY MEMORANDUM
Executive summary:
New and emerging communication and information technologies can revolutionise access to health information and health-related services, enabling more equitable access and improved quality of service for all.
With these new opportunities come fresh responsibilities and challenges that must be met by government at all levels.
With this in mind, and also in the light of the motion for a resolution presented to the 2006 Plenary Session on the creation of a South-East European telemedicine and virtual education network, the Congress felt that it would be of great interest to examine how e-health can be used as a tool for promoting democratic participation, social inclusion and a patient-oriented approach at regional level.
When juxtaposed with concerns about inequalities in healthcare provision between regions and within regions themselves, e-health services can therefore provide exciting new possibilities for redressing this imbalance.
Recommendations include the development of national and regional e-health action plans, the setting up of a joint consultative body representing civil society and national and regional healthcare providers, the shifting of resources from centralised centres to lower cost and networked facilities that are closer to the end-user, the building of e-literacy skills as early as possible, ensuring that national and regional telecommunications policies provide the best possible nationwide access to e-health channels as well as the highest possible connectivity between them and finally support for the creation of transborder e-health programmes and in particular the proposal for a South-Eastern telemedicine and virtual education network.
This report is part of the Chamber of Regions’ examination of how to restore a balance between economically disparate regions and between regions and their more highly-serviced urban areas and will be complemented, in the social field, by two reports to be presented at the 2007 Plenary Session on the balanced distribution of healthcare in the regions and ensuring continuity of social services in the regions.
1. INTRODUCTION[1]
The Council of Europe and health issues
The right to enjoy the highest possible standard of health attainable is guaranteed by the Council of Europe’s European Social Charter (CETS No. 163) and is considered to be a prerequisite for social inclusion.
The Council of Europe has a long-standing interest in health matters, having established significant and important actions across a wide range of health-related areas, the ultimate goal being to safeguard and improve the health of European citizens.
The hallmark of the Council’s approach, notably through its European Health Committee (CDSP) set up in 1954, has been to integrate medical developments on the one hand, with values incorporating the human dimension – that is legal and ethical issues and social and human rights. This strategy, and the CDSP’s stated intention to aim at the democratisation and humanisation of health services is particularly relevant to the increasingly integrated array of technologies known as “e-health”.
E-health (health services delivered over media such as the internet, telephone and interactive television) has evolved for the Council, in step with the development of the internet itself and it is therefore timely for regional and local authorities to develop an understanding of their role in this new area.
In many member states, health is the responsibility of regions, while in others national systems dominate. Public sector reforms in many cases are shifting responsibility for public services such as health toward local and regional levels, as well as introducing changes to incentivise performance and quality improvement in health systems.
E-health is seen as an area of future development consistent with these objectives, by improving local health service provision and achieving gains in productivity and value-for-money. Health care systems have, in general, been seen as late in adopting new information and communications technologies, compared to other sectors of the economy.
At a time when there are growing concerns about the inequalities in healthcare provision between regions and within regions themselves, e-health technology is creating new possibilities and providing novel challenges for policy makers. Where traditional health services were designed around existing infrastructure, no matter how inconvenient, e-health enables the logic of locality to influence how health delivery is configured.
Description and scope of present report
The Chanber of the Regions of the Congress of Local and Regional Authorities of the Council of Europe has sought to frame the issues in e-health – benefits, challenges – for its members and for the Congress as a whole.
This report will provide an overview of what e-health means, explaining how it is designed to work for patients as citizens and as a way of delivering health services. The implications of e-health are described; as with any new technologically-based source of change, it has an impact on how health services are delivered by health professionals and health service providers.
The benefits of citizen-centred e-health will also be described, both for patients and citizens and for health professionals. The potential benefits for regions will also be outlined, with links to case studies helping to put the opportunities described into context.
The report will further underline the range of advantages that regional thinking brings to understanding e-health and define an appropriate action plan for regional bodies within member states, and importantly, offer principles to guide development of e-health for social inclusion and democratic participation, with specific relevance to a regional and local approach.
From this perspective, e-health should be seen by policy makers as more than just some new technology for improving local health service delivery, and rather as a tool for democratic participation on a par with e-learning, e-commerce and e-government.
2. DEFINING HEALTH AND E-HEALTH
What is ‘e-health’?
The “e” in e-health means “electronic” and is a coined phrase to describe interactive health services comparable to e-learning, e-commerce or e-government.
This interactive environment comprises the capabilities that we now think of generically as “the Internet” but should also be thought of as including mobile and fixed-line telephones, radio, and interactive digital television. Advances across all these media define the possibilities for e-health, with each technology offering its own service capabilities. E-health technologies also include the use of for instance bio-sensors, wireless telemetry, robots, and computer software.
Most of the understanding of e-health has focused on the Internet because of the virtual flood of health-related information that has become publicly available, plus the emergence of Internet pharmacies and increasing communication between patients and doctors through emails. In the beginning, email was the most common service running over the Internet, but with the development of “browsers”, the first being Netscape Navigator, followed by Microsoft Internet Explorer, Mozilla, Opera, and Firefox, the “web” was invented, known as Web 1.0. The web created the opportunity for information exchange beyond emails, into search capabilities, basic information-based services, directories, and interactive services for commerce, learning, and government, as well as e-health. However, Web 1.0 is evolving into Web 2.0[2] involves the ability to combine information from a great variety of sources into a single access point for users, offering enhanced opportunities to use information, or transact services, and includes podcasting, wiki’s and blogs.
A key feature of Web 2.0 is how its technical design enhances self-reliance of users of services and provides access to information in ways that suit them. This involves technical features which make it possible to harness ‘collective intelligence’ by letting people link their own interests to that of others, or to link their information and services to those of others.
It is important to visualise e-health within this broad context of evolving capabilities and interactive media. While an early example of an e-health service can be said to have been doctors and patients speaking on the telephone, the emergence of telephone-based nurse triage has now become an important example of an e-health service in many countries; the UK has integrated its 24/7 NHS Direct with an Internet information service and interactive television channel. This multi-technology platform approach to e-health service provision is important - as no one technology will dominate.
The Internet has become a backbone for e-health service development. Coupled with digital technologies new possibilities exist to construct highly integrated and networked health services, reaching into people’s homes, and providing real-time services.
While most countries have developed an interest in e-health, development has been slow or focused around very specific developments. In most cases, links between clinicians have been the priority, using video to provide tele-consultations, or send prescriptions or diagnostic images over a clinical network. Priority has also been on smart cards to record patient information, or development of an electronic health record. These are very important elements in a comprehensive e-health infrastructure.
Despite having standards for exchanging clinical information (DICOM 7), progress on standards is needed for the interoperability of sensors and general device connectivity between manufacturers.
Defining ‘health’
What is meant by health and indeed healthcare, itself, is relevant to the development of e-health. In its narrowest sense, healthcare is simply about existing healthcare services, with a focus on interactivity within hospitals and between doctors with their patients.
However, we must also be mindful of the wider definition of health itself formulated by the WHO in 1946: “health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” This approach is frequently missing in e-health.
With that in mind, for many, the scope of e-health is just a new way to deliver the existing clinical services of hospitals or primary care providers; indeed, this is called telemedicine (a type of e-health) and is the focus of most of the e-health projects underway. There is much to gain from this, especially if coupled with electronic prescribing, electronic appointment booking, access to an electronic health record, and the opportunity for face-to-face tele-consultations with one’s primary care physician or nurse practitioner.
A vision of health and well-being for e-health has the potential to be much more, as it will also need to take account of the broadest range of health needs and interests of citizens, and it is here that social inclusion becomes a powerful integration force. Health promotion opportunities and prevention become important components, as do health in the workplace or in schools, within faith or ethnic communities. Developing social integration through e-health involving health services and social services, home care and public health, for instance, would lead to more integrated and citizen-centric design.
How healthcare and e-health-care differ
In a networked environment, location of service delivery for instance may be split between where the patient is located and where the doctor is located. Information on the patient may be gathered using diagnostic equipment handled by a lay person in the person’s home, transmitted over the telephone line or via the Internet to a specialist who will interpret it using at a clinical workstation in a medical centre. A person at risk of heart failure may wear a biosensor linked by mobile telephone to a central centre that would respond in an emergency, perhaps first by calling the patient or immediately sending an ambulance. The monitoring equipment may involve advanced computer software algorithms designed to look for patterns in the person’s heart rate.
These examples are designed to illustrate how e-health alters the way in which health care activities are organised. Knowledge usually held by highly trained specialists may reside in computer software, response capabilities may be remotely triggered by biosensors, nurses may intervene directly before a patient books an appointment or needs an ambulance. The decentralisation of technology, linked together over networks, means that major centres which are often far from the patient, can be accessed remotely from the patient’s home or local clinic. Importantly, in all cases, appropriate expertise is available, but not always in person and not by the traditionally expected professional. Technologies remove many intervening steps (disintermediate), speed and simplify clinical workflow, and pool specialist knowledge for wider use including by patients.
Advances in technologies are increasing the ability of people to self-manage their care, provided locally through home-based technologies, and with remote access to expertise. Web-sites or digital television can offer interactive health guidance and health self-assessment. The role of the patient is clearly being redefined, from being afloat in the sea of clinical services to increasingly taking leadership of their own health needs. This is particularly appropriate for people with long-term health conditions where the development of ‘expert patients’ shows the potential for people to take substantial control over their own healthcare management.
The development of e-health suggests the possibility that completely new types of care providers may be needed, e.g. interactive physician teleconsultation centres, or home-based diagnostic and treatment monitoring services. Taking a wider view of health, as proposed, we see these services enabled in the workplace and schools, and providing highly customised services to specific sectors of society. At present, though, traditional providers are seen as enabling e-health by extending their existing services. However, given the possibility to redesign services, the risk is that e-health simply becomes an extension of existing patterns of service rather than offering significantly new approaches from a citizen-centric perspective.
There are managerial and administrative benefits from e-health that may be explored separately.
Therefore, e-health is an increasingly integrated array of technologies, providing information, services and communication.
Health information
The Internet is very good at providing information in a rich visual form, and is increasingly being improved to provide accessibility for people with visual or physical disabilities. The telephone and television are generally mundane technologies but information provision is an established capability. Information can also be provided through digital radio, blogs, and through podcasts, which have been used in health education for instance.
The current issue regarding health information is to do with the quality and reliability of that information and ensuring that it is presented in ways that support patient understanding, literacy levels, and decision-making.
Health services
People are used to obtaining services via the telephone, and it is used routinely for consultations between clinicians. Many services can be based around the Internet by enabling patients to book appointments, or obtain medicines from Internet pharmacies. The Internet can be used to link clinicians remotely to facilitate the transmission of diagnostic images and clinical data or enable electronic prescribing, though many clinicians have concerns about the security of the Internet for this purpose. The same services that can run over the Internet can run over digital television, using cable or satellite.
Experimental examples of e-health include Internet-enable remote robotic surgery, other developments will focus on remote diagnostic imaging and monitoring of patients. Home networks for monitoring of people with long-term conditions or with chronic heart failure, for example, can be provided from regional locations, but with local support and response in emergencies. These technologies will increasingly be “smart technologies” to enhance their ability to identify health problems. There is a need to make home-based technologies more friendly to users and appropriate for placing into people’s homes.
Communication
Two-way communication is readily available through e-mails, telephony, video and chat messaging all through the Internet while advanced two-way narrow-casting (to an individual home) have been trialled over digital television. From the patient’s perspective, the immediacy of response in emergencies is paramount, while delayed communications may be acceptable under other circumstances.
A key barrier to wider two-way communication between patients and health professionals is ensuring appropriateness, if communications is initiated by the patient. Communications initiated by health professionals are most likely to arise from patient monitoring, a response to an emailed enquiry or for follow-up. This area continues to be a challenge for e-health, in particular, to balance the needs of the respective communities, but also to find ways that work for people.
A model for e-health for different people
Future directions
The original development of stand-alone applications for e-health are likely to be replaced by more integrated approaches and devices. However, many clinical applications are being developed without clear guidance of where patient service areas are in the most need, or where the most benefit could be realised.
The policy environment for e-health is maturing with a number of policy-based priorities to guide developments. Technology is evolving. Despite these advances, comprehensive and integrated e-health services are still largely absent from the patient’s perspective. In part, this is driven by the payment systems of health systems which rarely recognize e-health activities for reimbursement. This tends to keep e-health activities as small-scale pilot projects. Real-world testing and development of the potential requires leadership. Scoping e-health services regionally builds on the integrated nature of the local infrastructure. It would not try to develop national programmes that may span too many disparate service delivery environments, complex financial arrangements and potentially conflicting local implementation priorities. The future of e-health is regional and local.
3. THE BENEFITS OF CITIZEN-CENTRED E-HEALTH
Benefits of e-health
The choice facing e-health developers is between being pushed into providing e-health in specific ways because there is technology available, or to pull the technology into applications and approaches that reflect social and healthcare priorities. Both approaches work well together, though, as technology creates possibilities that have not been available before, as well as novel challenges for policy-makers, while identifying important social needs and priorities acts as a spur to innovation and application.
Citizens
E-health should embrace the same social values that apply to health and social care services, best understood in their cultural context. These include considerations of social justice, and equality of access to services – this ensures that e-health systems operate fairly and in the user’s interests.
· E-health services should be designed as flexibly as possible to meet the diverse needs of citizens. This is a departure from traditional service provision that is often designed from the service provider’s perspective more than the patients.
· E-health means 24 hours a day, and 7 days a week.
· E-health is designed from the perspective of the user, whether a patient, care giver or person just seeking health information. This requires an emphasis on how health information is organised to meet diverse literacy capabilities, including in other languages as may be appropriate. It is no longer sufficient for the information to be accurate and current, it must also be usable – that is, assist users do what they need to do with it – and meet manifest needs.
· Literacy for e-health begins in the schools, and schools should be seen as a key component of any integrated e-health information system, to build the necessary health literacy skills early.
· Using a citizen-centric perspective will affect existing relationships and arrangements between patients and care providers, and in particular the notion of the primary care provider. The doctor/patient relationship has always involved relationships with other service providers. But critical information did not always make its way back to the primary care provider. As more points of contact with e-health providers are created, the importance of an electronic health record, accessible by patients, and clinicians, to bring all health information is essential. The doctor/patient relationship will be altered in many ways and doctors already report some anxiety with patients who show up with stacks of printouts from the Internet on what is wrong with them. But e-health means that patients will be more informed about wellness, ill-health, the determinants of both, and the options available for health promotion or treatment and thereby be a more informed. To release this benefit will require the involvement of clinicians.
· Chronic or long-term conditions have often meant institutionalisation of individuals, but e-health can mean freedom within the home, with remote monitoring, for such sufferers.
· Virtual communities are a feature of the Internet and many of them focus on health issues, where current diagnoses are shared, medicines or treatments discussed, and social support provided. This is a powerful development which can only be helped further by e-health, so long as the underlying logic continues to focus on patient empowerment.
The key benefit to citizens from e-health will be that all this information and communication and these services will be provided locally, to where the person is located, at home, at work, at school, wherever. Coupled with the real-time nature of e-health, that is, direct access that is immediately responded to, people will find a step-change improvement in the perceived responsiveness of health services.
Health professionals
Benefits to health professionals are varied, as they will experience in many cases potentially significant alteration to the way they work. But key benefits will be to improve their access to clinical decision-support systems to enhance the quality of their decision-making, and thus reduce potentially dangerous clinical variance in treatment or diagnosis. These systems provide health professionals with access to rich information content to support evidence-based clinical practice. Networking of clinical decision-support means that no clinician needs to be out of reach of support or advice.
E-learning for health professionals (via Internet, television etc.) is a particular benefit of a comprehensive e-health system, offering flexible access to educational opportunities, and innovative learning through the Internet in particular. Pressure on health professionals to be up-to-date is substantial, and in many jurisdictions, health professionals are required to undergo mandatory recertification every few years, or participate in mandatory continuing professional development. E-learning as a key component of e-health offers an easily accessed and flexible support.
Much of the e-learning can be made available to help patients with long-term conditions, for example, to support their management of their own health. Similarly, the evidence-base that health professionals use may be repurposed for the public as one way of improving the quality of publicly available information.
Service providers
Perhaps the overwhelming benefit e-health presents service providers is the opportunity to redesign their operations in ways that are locally responsive, that exploit the benefits of available technologies, and position their priorities from a patient perspective. Key benefits for providers may be in improved productivity. Sensible e-health planning would seek to avoid inappropriate duplication and overlap, as these are not just sources of inefficiency, but also areas of potential confusion for users. A common telephone number for telephone advice, for instance, would be appropriate, even if the call is routed to a local provider that might vary during the day.
The logic that health centres also house considerable clinical expertise becomes even more important in a networked e-health world as they will provide the important anchoring of specialist advice to remotely provided and located services.
Services traditionally based in secondary care settings are moved outward to primary care settings, or into the home. Indeed the cascade of services, information and communications from the traditional setting, downward and outward embraces the principle of subsidiarity quite readily, as the technology enables services to be decentralised to the level at which they are most efficiently and effectively provided. This takes us into many settings that are often ignored in e-health, such as schools, the workplace, besides communities, and the home.
Academe and industry
Developing e-health should embrace the local capabilities of the academic and commercial communities. The academic centres offer excellence perhaps to conduct the necessary evaluation studies of the effectiveness of e-health services or collaborate with industry on research and development of new e-health technologies. Academic health centres in particular offer the opportunity to anchor a test-bed for e-health services.
Drawing on the known benefits of biotechnology and research clusters, ‘e-health clusters’ within the regions can offer key benefits such as a focus for new business investment and employment that is less cyclical, draw academe and industry together, and provide a focus for enabling local e-health implementation.
Since e-health infrastructure needs to be thought of an integrated whole, albeit made up of many components, there are enterprise-level benefits (which can also be enjoyed by regional and local authorities) to regionally-defined e-health systems that integrate across academe and industry, that are to be preferred from systems designed at the national level.
Health systems
Whole health systems will benefit from e-health if the information that links patients and doctors, embedded in a universally accessible electronic health record, exists. It is the fragmentation of this chain of information between providers as patients are referred from one place to another that is a frustration for all, a major source of clinical errors, and a cause for concern for those who are trying to built integrated health care.
In system development, there is a difference between the level at which at a system is designed, and the level at which it is delivered. E-health liberates the health system designers to focus on local service delivery priorities.
Regions
What really emerges as the main benefit is the ability of e-health to provide locally-based, freestanding, but networked, specialist diagnostic and health services. This would include locally contextualised health information and communication. Traditional health services were designed around hospitals or clinics, these became the built infrastructure of health care provision, and people went to them no matter how inconvenient.
E-health, in contrast, enables the logic of locality, within the community as defined by users, to influence how e-health is configured. The regional advantage works if it defines itself as the locality from the patient’s perspective.
The regional benefits can be summarised as:
· Realising the primary benefit of e-health, that is locally defined services;
· Achieving a measure of improvement in value-for-money by shifting resources from centralised centres remote to the public to lower cost facilities that are closer to the user;
· Bringing the opportunity to create e-health clusters for research and development, and investment and employment,
· Avoiding the design problems of national programmes that may span too many disparate service delivery environments, involve complex financial arrangements and suffer from potentially conflicting local implementation priorities.
E-health case studies
Technology-based e-health network example
· Greece: www.hygeianet.gr/ Hygianet implements a regional telemedicine network for Crete
· Slovenia: www.zzzs.si/kzz/ang/hic_indx.htm smart card for health
Regional and local e-health planning and development example
· Italy: Veneto Region for tele-homecare [www.medicall.it/default.asp?id=15&mnu=15 ]
· Spain: Barcelona: e-Vital project to trial telemedicine homecare to COPD patients
E-health service delivery-based network example
· UK: England: NHS Direct with Internet, telephone and digital interactive television
· Norway: Tromso/Northern Norway: remote access tele-consultations linking with nursing homes
· Denmark: www.sundhed.dk health information and service portal; in September 2005, Danish citizens could access their health records using a digital signature.
· Sweden: www.carelink.se health information and service portal
Using advanced digital media example
· UK NHS Digital interactive health television
4. THE REGIONAL ADVANTAGE
The regional advantage lies in the closeness to the citizen. E-health moves the point of contact between health providers and systems very close to the citizen and patient. This decentralisation brings with it understandable tensions between equality of access and universality of health systems, with the local and highly customised provision.
In many countries, regions already have responsibility for health service provision and will be familiar with, but perhaps not always comfortable with, reconciling the demands of local provision with national expectations, such as portability of benefits, access or reimbursement. Regional authorities will need to explore how to embrace the leadership to achieve locally meaningful e-health. The advantage that all regional authorities have, regardless, is that health services are perceived by the public as locally provided, regardless of how they funded or organised (whether at regional or higher levels).
As noted, health care systems are still exploring the appropriate level at which decision-making should take place, as well as the appropriate population for what level of service provision. The principle of subsidiarity defines an important test and standard and has specific meaning when interpreted for e-health, as services are essentially being personalised and customised for individual users.
Nevertheless, regional authorities can lead on this challenge because in many cases they have more direct access to the necessary levers for change, not exhaustively including:
· All regional and local authorities enjoy democratic legitimacy and accountability that is frequently lacking in health care systems, and which empowers regional authorities to institute changes.
· Regional and local authorities may be said to ‘own’ their local problems, which they are constituted to deal with. They will have the necessary resources to assess and analyse local community requirements, and take forward proposals and plans for change.
· Regional and local authorities have the responsibility to represent local interests to other levels of government or the national government and to identify and act on these regional and local priorities.
5. THE REGIONAL ROLE IN IMPLEMENTING E-HEALTH
Action plan
An outline of an action plan defining a regional role would comprise the following considerations:
Develop a local health information society
Regions should identify the public’s needs, existing and missing resources for this. In particular, a local or regional description is needed, comprising:
· current state of development,
· publicly desirable attributes, benefits and outcomes,
· challenges and opportunities development of a local health information society would entail.
Assess the ‘e-health-readiness’ of the local health system
Each locality that is considering developing an e-health infrastructure will need to assess the extent to which local health care system providers are willing, ready and able to participate. This should include taking an inventory of any existing e-health projects and plans and their state of development. This should include assessing the sources of funding and reimbursement.
Measure the current health impact of the healthcare system
The impact of the local healthcare system would need to be mapped out to identify key providers and their roles. Assess what areas would be specific local priorities based on areas of early potential for e-health implementation that are also areas of compelling public interest.
Determine local requirements and consult with citizens
Different localities will have different health status, performance of local health providers, and public views of priorities. As well, what the public considers priorities may not be the same as what those involved in providing health service consider priorities. All these need determining.
E-health can be esoteric and will undoubtedly require comprehensive public involvement to implement a local e-health plan. Good practice would suggest a need to raise public understanding and awareness and discuss public attitudes toward health to identify priorities that e-health might enable. There are a variety of strategies available to have citizens actually design their own solutions to their health problems, and thereby provide the appropriate guidance on the design of the local e-health system.
Subsequent system planning and public participation should favour achieving public agreement on priorities and outcomes. At this stage, technical issues are less important than getting the purpose of e-health, and its outcomes right.
Monitoring
It is unlikely that a functioning e-health system will emerge in the first instance. Instead, progress will be uncertain in some areas as approaches are tested and public reactions assessed. What is important is to identify what approaches are best at enhancing key objectives, and achieving social cohesion that the local community recognises as such, within a framework that is democratically legitimate.
The responsiveness of the local e-health system will need to be monitored, with respect to the identified priorities. In most cases, this will relate to the continued tracking of changes in public health, with a specific focus on measuring the impact of e-health.
Having identified what does and does not work, there should be some strategy to learn from this and tell others. Importantly, if something is not working, stop doing it.
Build and develop for the future
Having developed a current understanding, realise that technologies and social attitudes change, so having anticipatory capacity at the local level becomes very important. The more the regional authorities and the public think about and try to anticipate the future e-health requirements, the easier it will be to build change into the system. Rigidly structured e-health is a contradiction, as the hall-mark of e-health is its responsiveness to the changing needs of citizen users.
Maintain and build upon e-democracy and e-government developments.
The Council of Europe’s Recommendation (2004)15 on electronic governance provides important and relevant guidance to local authorities in developing an appropriately accountable e-health system.
Build further legitimacy
E-health is a citizen-centred service approach, and when anchored at regional and local level should enjoy considerable public support and legitimacy. Regional authorities should also see their role in e-health as bringing greater democratic legitimacy to balance any democratic deficit in health system planning. E-health, once constituted, becomes a key component of local service delivery, and cannot be ignored within the system’s overall planning.
Principles to guide development of e-health for social cohesion and democratic participation
Three key design features are generally associated with high performance in the provision of public services:
· being centred around the needs of the citizen, so that information on or access to services is organized in ways that reflect how citizens seek access, rather than how health professionals would normally want to present this material; issues of public literacy are particularly important here to avoid overly specialized clinical language where it is inappropriate;
· offering well-connected access to other channels (telephone, Internet, television, radio, etc.) so that users can as easily as possible move between these different channels as their requirements change.
· providing high levels of connectivity to other related services, regardless of the access technology used, so that users can move between accessing one type of service to another with ease in a seamless way.
While progress in e-government is not synonymous with e-health, the need to develop it in appropriate ways is, and the difficulties in getting e-government to work should be a caution that e-health will also face comparable challenges. The diversity of actors, from hospitals, to community clinics, and medical device companies, primacy care physicians and community-based and social agencies alone defines a complex web of interests to be accommodated.
Regional and local authorities must retain the democratic and social legitimacy and use processes that are consistent with citizen empowerment for e-health. This keeps the focus of regional interest on priority setting and outcomes that are sought from e-health by citizens.
Principles to guide development
Guideline for social inclusion and democratic participation
Citizens can and should design and develop (with those responsible for implementation) their own e-health systems to ensure a focus on their needs and patterns of use, and not the needs of health professionals or service providers to determine what those services are and how they will be provided.
Technical design guidelines that enable social inclusion
The citizen’s use of e-health must be as seamless as possible, as they move between seeking information, using a service, or initiating communication.
E-health should be seamless in terms of who the user is: a patient, informal care giver, a person with a long-term condition, just newly diagnosed or just seeking information, or any other relevant way of grouping potential users.
E-health design must respect how people do things, that is, how they ask questions, using ordinary words, the way they tend to use the Internet, telephone, or television. It should facilitate ease of use, to enable the most challenged user to fully navigate the e-health infrastructure, as well as evolve as users become more experienced. In no way should users be required to have specific literacy levels or technical competency.
Design and use should be as technologically neutral as possible to ensure that as technologies change, the e-health system from the user’s perspective maintains its robustness and stay focused on the social priorities, and not become a showcase for technology.
High levels of connectivity should exist amongst the e-health technologies that are involved. Regardless of the way that citizen’s access the e-health system, they will have full-access from any technological starting point.
6. RELEVANT INTERGOVERNMENTAL AND INSTITUTIONAL CONTEXT TO SUPPORT THE ACTION PLAN
National frameworks
Regions will need to identify specific national frameworks of relevance.
Council of Europe
The following Council of Europe texts provide social inclusion and technical guidelines in the framing of regional action plans:
· European Social Charter (revised), in particular Articles 11 and 13;
· Parliamentary Assembly Recommendation 1626 (2003) The reform of health care systems in Europe: reconciling equity, quality and efficiency
· Committee of Ministers Recommendation Rec(2004)15 to member states on on electronic governance (“e-governance”)
· Committee of Ministers Recommendation Rec(2004)17 to member states on the impact of information technologies on health care – the patient and Internet
European Union
· Action Plan for a European e-health area
World Health Assembly
· eHealth Resolution (WHA58/28)
Additional and Selected Web Resources on e-health projects, information and contacts
· eEurope 2005 Action Plan with information on e-health, e-learning and e-government: www.euser-eu.org/Document.asp?MenuID=6 including detailed country briefs on e-health activity, priorities and developments at www.euser-eu.org/eUSER_eHealthCountryBrief.asp?MenuID=118 , covering all member states of the European Union.
· eHealth InfoSource cybersanté: Canadian government information resource on e-health publications, international focus: www.hc-sc.gc.ca/hcs-sss/pubs/ehealth-esante/infosource/index_e.html
· European Health Telematics Association: www.ehtel.org
· HINE: Health Information Network Europe: www.hineurope.com
· iHealth Beat: California Healthcare Foundation information resource on developments in e-health in the US: www.ihealthbeat.org/
· International Society for Telemedicine and ehealth: www.isft.net/cms/index.php?id=1
· Norway: Telemedicine Centre: www.telemed.no
· Oxford University Internet Institute www.oii.ox.ac.uk/
· Telemedicine Information Exchange http://tie.telemed.org/
· UK: www.ukeha.co.uk
· US Association of Telehealth Service Providers: www.atsp.org/
About the author
Michael Tremblay PhD worked with the Council of Europe on Recommendation 2004(17) of the Committee of Ministers to member states on the impact of information technologies on health care – the patient and Internet (Adopted by the Committee of Ministers on 15 December 2004 at the 909th meeting of the Ministers' Deputies). He has prepared policy research on the impact of telemedicine, legal aspects of telemedicine, electronic prescribing, Internet pharmacies, artificial intelligence in healthcare and digital interactive television. He was co-founder of a company that launched the world’s first digital interactive television channel on health, Living Health, in the UK. More information is available at www.tremblay-consulting.biz, or from the e-journal, www.policyinsider.com.