COUNCIL OF EUROPE
    COMMITTEE OF MINISTERS

    Recommendation Rec(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)

    The Committee of Ministers, under the terms of Article 15 b of the Statute of the Council of Europe,

    Considering that the aim of the Council of Europe is to achieve greater unity between its members and that this aim may be pursued inter alia by the adoption of common rules in the health field;

    Recalling the commitment of member states to the fundamental right to freedom of expression and information as guaranteed by Article 10 of the Convention for the Protection of Human Rights and Fundamental Freedoms;

    Recalling that Article 2 of the Convention on Human Rights and Biomedicine establishes the primacy of the human being: "The interests and welfare of the human being shall prevail over the sole interest of society or science";

    Recalling that Article 3 of the Convention on Human Rights and Biomedicine requires that Contracting Parties provide equitable access to health care of appropriate quality; Article 4 requests that any intervention in the health field, including research, must be carried out in accordance with relevant professional obligations and standards; and Article 10 establishes the right of everyone to know any information collected about his or her health;

    Recalling the Convention on Information and Legal Cooperation concerning "Information Society Services", setting up a legal information and cooperation system in the area of new communication services and extending the application of Directive 98/48/EC beyond the borders of the European Union;

    Referring to the Declaration and Action Plan of the 2nd Summit of Heads of State and Government of the Council of Europe of 11 October 1997, where the Heads of State and Government resolved to develop a European policy for the application of the new information technologies;

    Convinced that new communication and information technologies will offer new opportunities for access to health information, education, communication and health-related services;

    Convinced that the use of new communication and information services will enable the participation of citizens in health matters, communication between individuals and health professionals, as well as the provision of health-related services;

    Recalling in this context Recommendation No. R (99) 14 of the Committee of Ministers to member states on universal community service concerning new communication and information services;

    Recognising the possible negative effects of the information society and aware that the technology should be used to lessen its own ill-effects;

    Recalling in this respect the Convention on Cyber crime and Recommendation Rec(2001)8 on self-regulation concerning cyber content;

    Considering that the collection of medical data often raises special concerns with regard to data protection, with a need to especially monitor situations where data are to be collected or used for purposes other than immediate health benefits for the individual;

    Recalling in this respect Recommendation No. R (97) 5 of the Committee of Ministers to member states, on the protection of medical data;

    Recalling Recommendation No. R (99) 5 of the Committee of Ministers to member states for the protection of privacy on the Internet, which provides a model for codes of conduct for protection of personal medical data;

    Aware of the fact that many people in Europe do not have sufficient opportunities to access new communication and information services, and that the development of access at community level can be achieved more easily than at individual level;

    Aware of the social, economic and technical differences which exist at national, regional and local levels for the development of new communication and information services;

    Aware of the possible synergetic effects of cooperation between public authorities and the private sector for the benefit of users of new communication and information services;

    Aware of the vital importance of "design for all" of the new technologies, that are accessible to all, to cater not only for people with various disabilities, but for anyone of a generation that has not grown up with the Internet;

    Recalling in this respect the Resolution ResAP(2001)3 of the Partial Agreement in the Social and Public Health Field "Towards full citizenship of persons with disabilities through inclusive new technologies", aiming at preventing the new type of "digital social exclusion";

    Recognising the right of patients and citizens to be provided with and to have easy access to relevant information about their health and health care in a format and language they can understand;

    Having regard to Recommendation No. R (2000) 5 of the Committee of Ministers to member states, on the development of structures for citizen and patient participation in the decision-making process affecting health care;

    Considering that it is necessary for each member state to help to promote health knowledge and Internet competence across society and broaden the public's general knowledge about the potential and limitations of information technologies in health care;

    Recognising that empowering citizens through the Internet can revitalise representative democracy, enhance social cohesion, lead to the better functioning of the health care system, and establish a better balance of interests and a partnership between the various players in the system;

    Aware that there are currently no agreed standards of practice with respect to the use of the Internet by patients or for the provision of health care, and that therefore the quality of health information on the Internet and the use of the Internet in health care should be seen as areas of high priority for such development;

    Recognising that the Internet has created a global health information community which transcends national borders and raises issues for states that go beyond their jurisdiction for Internet matters, making them profoundly difficult to regulate;

    Aware that national circumstances differ and that individual member states are at different levels of development with respect to the implementation of the Internet, in health or other areas, and that member states will need to adopt appropriate measures adapted to their situation;

    Aware that creating supportive environments for the application of information technologies in health matters requires investment for all countries, regardless of their economic situation and differences regarding the development of the Internet,

    Recommends that the governments of member states:

    1. adopt, where necessary, policies, legislative and other measures necessary for developing a model framework for best practices regarding information technologies in health related matters; in particular:

    – by acknowledging the fundamental right of citizens to have access to information on health issues, and therefore ensuring that existing legislation and policies are conducive to this end;

    – by reviewing existing policies, legislation and practices that fundamentally restrict, control or hamper patient access to information and services via the Internet and other communications media;

    – by encouraging international organisations to develop a register of current legislation in all member states concerning national regulations with an impact on the Internet and patients or citizens;

    – by creating an accessible database with a view to identifying all such legislation and policies which might conflict with the accepted fundamental values and principles;

    – by ensuring that appropriate access to evidence-based practice on the use of the Internet for purposes of accessing information, enabling communication between patients and clinicians and delivery of health services, be reflected in the training of all health professional;

    2. support and participate in preparing guidance tools for better practice of Internet users;

    – by ensuring that appropriate evidence-based guidance is developed on new information communication technologies, such as the Internet, and that such guidance is integrally linked with the existing body of knowledge on educational practice guidance;

    – by making educational tools available to developers of educational materials, courses and other learning opportunities, for patients, citizens, as well as health professionals;

    3. promote international cooperation between organisations, research institutions and other agencies that are active in the health and Internet field in order to:

    – develop international and collaborative arrangements to define and develop appropriate ways to exploit the Internet for optimal use by patients and citizens, including, but not limited to:

    - quality of information provision;
    - accreditation of health information services and providers;
    - promoting the use of high quality legal standards in the cross-border exchange of health information between clinicians and patients;
    - confidentiality, legal jurisdiction, fraud and misrepresentation by providers of information and services, and redress;

    – allow the relevant organisations to review existing regulations, to ensure their compatibility with the Internet environment in respect of cross-border matters;

    – avoid and solve potential conflicts between on the one hand existing data protection laws and on the other hand the freedom for patients to access health information and services in a cross-border environment;

    – ensure better protection of human rights and ethical principles of the Council of Europe;

    4. foresee a periodical reassessment of this Recommendation in light of the technological advances of the Internet and other existing and emergent information and communication technologies. Issues of the quality of health information and services, legal jurisdiction; and compatibility with existing Council of Europe documents and those of other bodies should be addressed;

    5. take to this end, whenever feasible, the measures presented in the Appendix to this Recommendation, taking account of their respective national circumstances;

    6. disseminate widely this Recommendation and its Appendix, where necessary accompanied by a translation;

    7. bring these texts in particular to the attention of health authorities, the new communication and information industries and medical end-users, targeting the patient groups.

    Appendix to Recommendation Rec(2004)17

    I. GENERAL CONSIDERATIONS

    1. The use of information technology in health care is of enormous potential to all citizens in improving information, communication and services supplied via Internet. However, the advantages and disadvantages of the Internet should be made clear to the patients-users and/or their carers. Governments should promote information about the fact that the Internet itself does not produce any new medical evidence or guarantee quality. The expectations of the benefits of new technologies should be mitigated by the latency period between the development and actual availability of new measures.

    2. Governments and medical authorities should be aware of the limitations of the Internet as a source of information. Failure to make known these limitations is unethical and infringes the autonomy of the individual.

    3. The responsibility is becoming increasingly shared, with health professionals maintaining their responsibility, but patients taking on more responsibility for the choice of means, and of personal responsibility through self-care and self-management.

    4. The focus of this Recommendation is not only on patients, but also on all possible users, called "end-users" to avoid the more limiting connotation of the word "patient".

    5. Taking a patient-oriented perspective, the three areas of end-user needs have been identified: 1. information, 2. communication and 3. services.

    6. The field of information technology develops so quickly that the periodical reassessment and revision of this Recommendation should be foreseen.

    II. GUIDING PRINCIPLES

    1. Government policy should be based on values propounded by the Council of Europe: human rights and patients' rights, human dignity, social cohesion, democracy, equity, solidarity, equal gender opportunity, participation, freedom of choice – balanced by the obligation to help strengthen one's own health.

    2. The state cannot be solely responsible for the Internet, since the Internet is unique in its forms of global governance, and operation, yet often falls within the jurisdiction of countries in virtue of the breadth of its applications. A shared approach to its development by all areas of society is necessary. This ensures that fundamental tenets of democratic society extend to the Internet and its applications

    3. Governments should recognise that utilisation of the Internet is part of the fundamental freedom of choice people have in seeking information, communications and services in health.

    4. Governments should promote public awareness of tools promoting quality, including systems for accrediting health information providers.

    5. Governments should not apply an "Internet exceptionalism" approach; treating Internet as something fundamentally different, requiring new rules. It would just create barriers to the integration of the Internet into society.

    6. Governments should ensure that regulations and laws are technology-neutral, to ensure that the legislative purpose is not invalidated by future technological innovations.

    7. Health information should be in principle neither restricted nor censored. Some restrictions may be justified, for example when regulating Web advertising. However, concern about the quality of health information should be made a priority.

    8. Correspondence between patients and health professionals should in all instances remain private and protected.

    9. Individual member states should choose how and in what way to organise their health services to make use of the Internet.

    10. Health policies are founded on the principle of universal access to health services and generally embrace active efforts to bridge social divides. The adoption of the Internet as a tool for health policy implementation is compatible with this approach.

    III. ACCESS TO THE INTERNET

    1. Member states should ensure low cost access to the Internet for all citizens, as part of the programme e-Europe 2005: An Information Society For All. It would serve also the health purposes and should improve the availability of modern information technology.

    2. Governments should identify critical gaps and barriers in access to the Internet for all, particularly to health-related Internet services: legal, social, economic, cultural, administrative and/or physical barriers. Measures and programmes should be implemented in order to reduce these obstacles, which often increase inequalities.

    3. Member states should take into account the needs of particular groups of citizens and patients.

    4. Member states should study the feasibility of developing ways to monitor the health impact of access to health information through Internet, in particular on emancipating patients, reinforcing their own responsibility and improving interaction with care providers.

    5. Governments should base their Internet access policy on the following principles: universality, recognition of borderless health services, technological neutrality and security.

    IV. IMPACT OF THE INTERNET ON CONFIDENTIALITY AND RESPONSIBILITY IN THE MEDICAL SETTINGS

    1. The services provided on the Internet could complement and enhance the traditional relationship between carers and the patient as well as the traditional model of consultation. In specific situations, they may replace traditional relationships only if potential shortcomings of online services could be neutralised by additional measures.

    2. The measures to protect confidentiality and privacy should guarantee the right of citizens to self-determination and therefore provide a legal basis for data processing on the grounds of consent, contract or law. The influence of the free access of patients to electronic health records should be considered.

    3. Individuals should not have to identify themselves except when it is important that their identity be known, e.g. to receive a health service or for medico-legal or reimbursement purposes. However, there are cases where anonymity might not be advisable, for example when communicating personal health data.

    4. Providers of information, communication and health services should under all circumstances be identifiable, including the final owner or provider.

    5. Internet care providers should be traceable and identifiable, so that security techniques, privacy policy and the identity of the individual in contact are known.

    6. National governments and industry should establish nationally acceptable systems to enable the individual's personal privacy and security, in particular by encouraging the widespread availability of digital signatures and digital identities, with suitably secure communications.

    7. Member states should promote the establishment of an authority or a committee, when not yet established or where necessary, which will be responsible for the development and updating of privacy and security standards.

    V. IMPACT ON HUMAN RIGHTS AND DEMOCRACY

    1. Member states should study the best ways of using the potential of the Internet to improve the health of the population by facilitating access to education and information on health related issues.

    2. Governments should take advantage of the important capacity of the Internet to facilitate and strengthen the position of citizens and patient in the shaping of health care policies.

    3. They should also encourage informed public debate between patients and citizens or services that use health information, in order to reach a consensus.

    VI. IMPACT ON HEALTH PROMOTION

    Internet should be used to improve the health of the population by facilitating access to education and information on health related issues and achieving effective participation on the empowerment of people and communities.

    VII. IMPACT ON QUALITY OF INFORMATION

    1. A key challenge for governments is finding ways to enable consumers and health professionals to tell the difference between good and bad quality information. For that purpose, efforts are needed to create a trustworthy Internet environment for all users.

    2. Properly regulated health information Internet sites, with suitable rules regarding identity of provider of information and provenance, should enable citizens, consumers, patients, and individuals generally to make up their own minds.

    3. Self-regulation and the use of ethical codes should be promoted by governments and the relevant authorities. In this respect the accepted criteria of transparency and honesty, authority, privacy and data protection, updating of information, accountability and accessibility should be taken into account.

    4. At a minimum, all Internet sites, whether providing information, communications or services should make explicit the following information:

    – authorship of the content and who owns the site content;

    – attribution of the content with specific information on who did the work;

    – disclosure of what information is gathered and for what purposes the personal data are used, as well as whether they share that information and if so, with whom;

    – disclosure of conflicts of interest, including any statements on the impartiality of the information. that includes sponsoring and hosting by third parties;

    – the date of the content is provided or the date of latest revision, including references to sources providing additional authenticity.

    5. Providers of information should be required to provide sufficient information to the public to permit identification of the sources of information, any intermediaries, and any other factors, which can offer evidence of the quality of the information. They must explicitly seek visitors' informed consent for specific data-gathering and data-sharing activities.

    6. Governments should assess what quality-control system for providers of information is most appropriate for their circumstances. Governments should not necessarily undertake this role, but only ensure that a quality-control system exists. They should use existing regulations to establish quality standards for health information on Internet.

    VIII. IMPACT ON THE CURRICULA FOR HEALTH PROFESSIONALS

    1. Governments should offer support to health professionals to embrace the potential opportunities of the Internet to improve their competence and to understand the nature of new roles and relationships with patients and citizens.

    2. Governments should facilitate the introduction of the use of information technologies to health care providers and teaching institutions, and to reform curricula appropriately.

    3. Health professionals need to learn more about confidentiality and privacy over the Internet and the impact that patient management of the clinical encounter will have on their practice patterns.

    IX. MEASURES TO DERIVE MAXIMAL BENEFIT FROM THE INTERNET

    1. The key areas of benefit for patients, for the public at large are:

    – supporting public education on media and individual health and for health promotion purposes;

    – creating a culture of high quality health information which could extend to other non-Internet media such as books, magazines, television and radio;

    – helping individuals and groups to organise themselves:

    into advocacy coalitions around health issues;
    to share experiences of care as well as information;
    to participate in civil society and health policy and planning;
    to allow third parties to offer intermediary services to individuals to support them, as “trusted third-parties” and “trusted health intermediaries”.

    2. There are also benefits to health systems, which should also be exploited:

    – appropriate telecommunications tariffs to ensure universal access to health information, communications and services to bridge social exclusion and the digital divide;

    – wider exploitation of new and emerging technologies that are in the public interest in the area of health, and a more rapid progression from the pilot projects of tele-health to its full scale implementation, as to the basis of a national information society, health policy and commercial strategy;

    – the use of the Internet in helping health service providers realise productivity gains from new technologies.

    3. Governments should identify ways to monitor the development of the application of the Internet in health and the related experiences, attitudes and behaviour of citizens and patients (medical end-users).

    4. Member states should consider establishing a standing committee on cross-border health (an observatory on international health and new technologies), to develop advice and policy guidelines for member states, and the development of appropriate regulation. This committee/observatory should help all member states develop appropriate guidance to cover a wide range of cross-border issues, including, but not limited to:

    – cross-border trade in health goods and services, such as medicines, digital telemetry and remote monitoring, including cross-border flow of health data (health records);

    – cross-border access to health information and internationally recognised standards for quality;

    – cross-border health communities and patients' groups;

    – cross-border flow of health data (telemetry) and information (health records);

    – cross-border education;

    – cross-border monitoring of health outcomes and health service production indicators.

    X. BEST PRACTICES

    1. Each member state should decide upon the extent of information linkages, which will be considered legal and should establish the corresponding legal framework. Subject to the available technology, this framework should be enforceable.

    2. Patients' organisations and NGOs should be encouraged to play an active role in the evaluation, the regulation and the accreditation of health information available through the Internet.

    3. Governments should take all precautionary measures so that the rights of the patients are protected and respected, as in the traditional medical setting.

    4. Member states should facilitate exchange of information regarding the types of fraud existing, the incidents reported and the policies, which has proved to be useful in similar cases.

    5. Governments and health providers should ensure that they use information technologies as a way of reaching out to the public for consultation on important issues, in an active and committed manner.

    6. Patients and consumers should be able to benefit from the use of the Internet when interacting with health providers, by being able to access health records, make payments, make appointments, or order medical products.

    7. Public education is necessary to ensure that people feel they understand and are capable of participating fully. It is up to educational institutions (from primary school to university and beyond) and patients' groups, to help them set up support and communications programmes. Encouragement could range from favourable tax breaks for innovative non-profit services, to grants to institutions to enable public education programmes.

    8. Third parties should be able to offer intermediary services to individuals to support them. The Internet has created the notion of “trusted third-parties” to ensure reliability in transactions between parties. The evolution of some into “trusted health intermediaries” may be appropriate and compatible with efforts to encourage individuals to use services, even if they do not do so directly themselves.

    XI. ROLE OF DIFFERENT ACTORS

    1. Government

    Governments need to learn how to participate in this environment in a manner which is compatible with the innovative and accessible characteristics of the Internet.

    Governments should promote specific development of the Internet and health by:

    – encouraging cooperation between institutions, whether public or private;

    – encouraging diversity in the provision of telecommunications services, including appropriately liberalised tariff structures to favour access and use to overcome potential social exclusion;

    – promoting policies and procedures which are conducive to the development of health services, improve access, and enable uptake of services;

    – promoting policies for good Internet use across the economy (public, private, voluntary sectors, individuals, patients) and which serve to enhance public knowledge through appropriate education in the use of the Internet;

    – promoting policies to encourage pro-active development of health innovations through the Internet to benefit patients and citizens in the three priority areas of information, communications and services;

    – protecting end-users from fraud, unethical or harmful practices, for example by:

    applying legislation on consumer rights to the Internet;
    applying legislation on patients' rights and data privacy to Internet transactions;
    applying legislation on professional misconduct, illicit practices and quackery to providers of services in Internet;
    applying legislation on drug sales to Internet.

    2. Patients and citizens as end-users

    Individuals using the Internet should:

    – exercise normal vigilance when accessing health information over the Internet to ensure that they are accessing information that is trustworthy;

    – ensure they are informed consumers of health information and services.

    3. Institutional health providers

    Institutional health providers should:

    – adopt models of service delivery over the Internet which are patient-centred;

    – offer meaningful services, access to reliable information, and enable effective communications, including bringing more tele-health services into mainstream service;

    – consider how the Internet can be a tool for rational service planning;

    – adopt policies and evidence-based practices which actively reward or encourage innovations in the use of the Internet for health service delivery.

    4. Health professionals

    Health professionals should:

    – be consumers informed of the Internet's potential to improve patient care, through access to reliable information, the offering of significant and substantial services and communications;

    – be encouraged to develop entrepreneurial solutions to tele-health opportunities and be given the freedoms necessary to establish responsible organisations for the delivery of evidence-based
    tele-health services.

    XII. RESEARCH AREAS

    Research programmes should address the following issues:

    – the needs of individual patients and citizens, through surveys and systematic study;

    – the role of patient advocacy groups, and that of non-governmental bodies generally in health;

    – the role of telecommunications companies and communications policies;

    – the responsiveness of health professionals and health service providers to innovation and change;

    – the role of the health economy more widely;

    – the impact of the explosive growth in mobile telecommunication and its use in health care, health and new media (Internet, digital television, mobile telephones in particular);

    – behaviour of patients and their use of new technologies;

    – the scientific evidence on the effects of tele-health services.



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