Patients Rights

Contents

• Acknowledgements
• Summary
• Historical Background
• Strategies for promoting patients' rights
• References

Acknowledgements

Index Foundation expresses special gratitude to the Royal Netherlands Government and the Royal Netherlands Embassy for the financial assistance in the implementation of this project, to the Institute of Public Health for the valuable guidance and expertise and the Institute of Social and Trade Union Research for organizing and conducting a survey among patients in three regions in Bulgaria.

Summary

Patient rights are a reflection of human rights. The human right movement has gathered importance in the world since 1945, when, in the Charter of the United Nations, member states reaffirmed their faith in fundamental human rights. This was followed, on 10 December 1948, by the adoption of the Universal Declaration of Human Rights and on 4 November, 1950, by the signature of the European Convention of Human Rights. The rights of the patients, as specific human rights became recognized throughout the European region only in the past two decades. This has triggered off a positive international trend in the consideration, definition and promotion of patients' rights and led to the development of a movement in Europe to ensure the rights of patients.

An important aspect of the European challenge is how to develop health care systems based on values enshrined in the European Convention on Human Rights and the European Social Charter. Present ongoing reforms in health care are mostly motivated by escalating health costs and increasing demands of the population. The question is how reforms of health care systems should ensure equitable access to health care which is both adequate and of optimal quality.

The first country in the world with special patients' rights law was Finland, where a law on the patient's status and rights came in 1992. The law was preceded by 20 years of discussions in the Finnish Parliament. The law is "administrative" i.e. it contains directives, which define the provider's duties instead of rights which patients can demand.

The second country to present patients rights law was the Netherlands. This was a part of a bigger law reform, the Medical Contract Law, presented in 1995. The Dutch legislation is "rights" legislation for patients. Since Finland and the Netherlands have shown the way a few other countries have introduced similar legislation - Israel (1996), Lithuania (1996), Iceland (1997) and Denmark (1998). The Danish legislation focuses strongly on the individual and his/her ability to make autonomous and competent decisions in relation to his/her health.

Norway has indicated the introduction of a law in the year 2000. It is expected to contain provisions designed to strengthen the individual's position in the health care system.

Other countries have chosen to seek different methods to strengthen the patient's position.

France introduced a Patient Charter already in 1974, and Great Britain - in 1991. The Charters are policy documents containing recommended minimum standards. Germany (1998) is also considering a [patients' Charter to be based on precedents of decisions made in the courts.

Some events have been initiated recently to put on the table for discussions and to strengthen the issue on patients' rights, e.g.

• 1994 WHO, Declaration on the Promotion of Patients' Rights, Amsterdam
• 1998 European Platform for Patients Organizations, Science and Industry, November, roundtable conference "The Patients Role in European Health policymaking: Patients in Partnership with Science and Industry"
• 1999 45th session of the European Health Committee (CDSP), Strasbourg (29-30) June, Recommendation to Member States to ensure that citizens take an active part in decision making process in health care.
• 1999 Patients Rights network renamed into European Partnership for Patients Rights and Citizen Empowerment (EPPRCE) WHO Regional Office for Europe in Copenhagen (22-24 April, 1999
• 46th session of CDSP, Strasbourg, December, 1999
• EPPRCE Network, Jerusalem, Israel, 24-26 May, 2000 (ethical issues; citizens in the decision making process; legal issues in health management; status of patients Europe)
• 13th World Congress on Medical Law, Helsinki, Finland, 6-10 August (most pressing ethical issues for the millennium, legislation on patients rights and how to implement it, teaching of medical ethics and law, ethical committees, status and rights of patients, etc.)

The good health of a population is a pre-requisite to the social well being and economic functioning of a nation. Health promotion and health care are important social goods, raising fundamental questions about social obligations and goals and the protection of human rights as essential for promoting health.

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Historical Background

Until the beginning of 1970ies the health professional    -patient relationship was primarily defined by the rules of medical ethics. In the following two decades the focus was shifted to legal provisions and the issue started gathering larger international attention.

The international regulations in the field of patients' rights in this period of time have been defined by the following legislation:
  · the Universal Declaration of human rights (1948)
  · the International Covenant on Civil and Political Rights (1966)
  · the International Covenant on Economic, Social and Cultural Rights (1966)
  · the European convention for the Protection of Human rights and Fundamental Freedoms (1950)
  · the European Social Charter (1961)

The first international event with such focus was the European Consultation on the Rights of Patients convened under the auspices of the WHO Regional Office for Europe (WHO/EURO) and hosted by the Government of the Netherlands (28    -30 March 1994). 60 representatives attended the consultation from 36 member states. It had a very deliberate purpose     - to define principles and strategies for promoting the rights of patients, within the context of the health care reform process underway in most countries. The Consultation came at the end of a long preparatory process during which WHO/EURO encouraged the emerging movement in favor of patient's rights by, inter alia, carrying studies and surveys on the development of patients' rights throughout Europe.

With the support of the Government of the Netherlands and in broad consultations with governments and other institutions in European countries, the Consultation adopted a Declaration on the Promotion of Patients' Rights in Europe. The Declaration, which has not lost its impact even today, constitutes a common European framework for action. It outlined the strategy for the promotion of patients' rights, covering:

  · Legislation or regulations, specifying the rights and responsibilities of patients, health professionals and health care institutions;
  · Medical and other professional codes, patients' charters and similar other instruments, drawn up on the basis of common understanding between the representatives if citizens, patients, health professionals and policy makers;
  · Networking between and among patient and health care provider groups;
  · Government support to NGOs in the field of patients' rights;
  · National conferences to bring the parties together;
  · Involvement of the media in informing the public and creating public awareness on the rights and responsibilities of patients and users;
  · Better training in communication and advocacy skills
  · Promotion of research

The Consultation also formulated for the first time the Principles of Patients' Rights and presented them in a comprehensive document to help the countries develop comprehensive policies on patients' rights. The following principles were adopted:

Respect of the human rights and values in health care

  · the right to respect as a human being
  · the right to self    -determination
  · the right to physical and mental integrity and security
  · the right to respect for his/her privacy
  · the right to respect ton his/her moral, cultural and religious values
  · The right to such protection of health as is afforded by appropriates measures for disease prevention and health care and to the opportunity to pursue his or her owns highest attainable level of health.

Information about health services and how to best use them

  · About the health status, incl. the medical facts about their condition; about the proposed medical procedures together with the potential risks and benefits of each procedure; about alternatives to the proposed treatment, incl. The effect of non    -treatment; diagnosis, prognosis and progress of treatment;
  · information may only be withheld from the patient when there is good reason to believe that this information would cause serious harm;
  · information must be communicated to the patient in a way appropriate to his capacity for understanding, minimizing the use of unfamiliar technical terminology;
  · patients have the right not to be informed, at their explicit request
  · patients have the right to choose who, if anyone, should be informed on their behalf;
  · patients should have the possibility of obtaining a second opinion
  · when admitted to a health care establishment patients should be informed of the identity and professional status of the health care provider taking care of them and of any rules and routines which refer to their stay and care;
  · Patients should be able to request and be given a written summary of their diagnosis, treatment and care on discharge from a health care establishment.

Consent

  · the informed consent of the patient is a prerequisite for any medical intervention
  · The patient has the right to refuse or halt a medical intervention. The implications of refusing or halting such an intervention must be carefully explained to him/her.
  · When the consent of a legal representative is required patients must be nevertheless involved in the decision making process to the fullest extent which their capacity allows;
  · In all other situations where the patient is unable to give informed consent, appropriate measures shall be taken to provide for a substitute decision making process
  · The informed consent of the patient is needed for participating in clinical teaching and scientific research. All protocols must be submitted to proper ethical review procedures.

Confidentiality and Privacy

  · all information about the patient's health status, medical condition, diagnosis, prognosis and treatment and all other information of a personal kind must be kept confidential, even after death;
  · confidential information can only be disclosed if the patient gives explicit consent; consent is presumed where disclosure is to other health professionals involved in his treatment;
  · all identifiable patient data must be protected;
  · patients have access to their medical files and to any other files and records pertaining to their diagnosis, treatment and care;
  · there can be no intrusion into a patient's private and family life (unless necessary to the diagnosis and in addition to his consent);
  · medical interventions may be carried out when there is proper respect shown to the privacy of the individual;
  · patients in health care establishment have the right to expect physical facilities which ensure privacy

Care and Treatment

  · everyone has the right to receive such health care as is appropriate to his or her health needs, including preventive care and activities aimed at health promotion; services should be continuously available and accessible to all equitably, without discrimination and according to the financial , human and material resources available in a given society;
  · patients have a collective right to some form of representation on each level of the health care system, including the range, quality and functioning of the care provided;
  · patients have the right to a quality of care which is marked by both high technical standards and a humane professional relationship between the patient and health care providers;
  · continuity of care, including cooperation between all health care providers involved in their diagnosis and treatment;
  · fair selection procedure for the treatment , where a choice has to be made;
  · to choose and change their physician or health care provider or establishment;
  · to be treated with dignity in relation to their diagnosis, treatment and care, with respect to their culture and values;
  · to enjoy support from family, relatives and friends during the course of care and treatment and spiritual support and guidance at all times.
  · to relief of their suffering according to the current state of knowledge.
  · to humane terminal care and to die in dignity.

The Consultation also mapped out the ways for the application in practice of the above strategy and principles. It was underlined that patients must have access to such information and advice, which will enable them to exercise the rights set forth in this Document. In the case of a violation they should be able to lodge a complaint. In addition to the courts there should be independent mechanisms at institutional and other levels to facilitate the process of lodging, mediating and adjudicating complaints. These mechanisms should further ensure assistance and advocacy on behalf of the patient. Complaints should be examined and dealt with in an effective and prompt way. Although no formal adoption of the Declaration was envisaged, it was expected that it would be widely supported.

Next to the WHO, the Council of Europe has also persistently pursued the idea of protection of the rights of patients.

The fifth conference of European Health Ministers held in Warsaw (7    -8 November, 1996) passed under the title of Social Challenge to Health: Equity and Patients Rights in the context of health reforms.

The main purpose of the Conference was to permit discussion at the highest political level of the major political, social and technical changes, which are raising major concerns:
  · the economic constraints in the face of increasing demands, particularly as a result of demographic change;
  · social exclusion resulting from health status;
  · weak user participation.

The Ministers discussed these concerns and particularly ways and means of facing up to the social challenges arising from the changes.

The Ministers felt that the solution lay in a tripartite social deal between patients, providers and payers, with the commitment of all sectors and the participation of all the protagonists to achieve equitable distribution.

The Final Text adopted at the end of the debate stresses the need for action on a number of important issues, particularly:
  · citizens and patients' participation in the conception, building    -up, reforming and functioning of a health system;
  · an equitable access to health care services by balancing the right to health care and financial constraints and addressing the needs of the most disadvantaged groups of the population;
  · a reassessment of the importance of health status for the social well    -being of the population.

The Ministers agreed that these issues required action at the level of the individual, at the level of health care delivery and at a governmental level.

The attention of the Committee of Ministers is drawn particularly to the recommendation that health issues should be put high on the political agenda of member States. Health was an indispensable prerequisite of social well being and was the best possible investment for the future.

The attention of the Committee of Ministers is also drawn to the proposal that the Council of Europe consider building up a network for an exchange of information between member States on:
  · patients' rights and patient participation;
  · the role of lay persons in promoting health in their own environment;
  · the exclusion of certain groups of patients, in particular the chronically    -ill and people with disabilities from society;
  · the involvement of the scientific community in a setting effecting treatment and procedures.

The European Health Committee (CDSP) at its 40th meeting (Strasbourg, 26    -28 November 1996) adopted TERMS OF REFERENCE for a coordinated research study (1997    -1998) on the development of structures for citizen and patient participation in the decision    -making process affecting health care. This was a reaction to the fact that the European citizens had become increasingly interested in question linked to health care and services they received and used. The organization of the health care system and its financing, the reforms under way and the setting of priorities in a context of scarce resources, as well as all the issues of access to health care imposed a set of problems which called for citizens' and patients' participation in the search of solution and settlement.

It was recognized that there is a need to develop structures allowing the citizens' and patients' voice to be heard in the decision    -making process in health care. The democratic participation of citizens and patients should be sought not only in difficult choices in health care but also in debating broad issues, values and principles of health care.

A research group was set up to:

    1. Review and analyze existing ways of setting up and developing structures for citizens' and patients' participation for citizens in the health care decision    -making process and in the health care policy, as well as the organizational, financial and functional aspects of such structures.
    2. Identify the health care fields in which the citizens and patients are more willing to participate in decisions related to their health, and the possible levels of this participation (local/federal/national, provision of health care services, treatment modality etc.), and explore what could be the citizens' and patients' extent of participation in the democratic monitoring of health care services
    3. Describe the potential difficulties raised by the involvement of citizens and patients in the decision    -making process in health care, such as: required information for such participation; possible divergences between the public and scientific opinion on given health care issues; organizational difficulties in developing structures for democratic public participation.

Experts were included from Italy, the UK, France, Poland, Portugal and the Netherlands.

Significant progress was being made meanwhile through the establishment of a Patients Rights Network. The last meeting of the network was on the premises of the WHO Regional Office for Europe in Copenhagen (22    -24 April 1999). 26 member states of the WHO European region attended the meeting, including Bulgaria. Next to the representatives of the European governments, there were also representatives of international organizations, NGOs, academic faculty members in the fields of law and medicine, representatives of patients' associations; health professional's organizations, patients' ombudsmen and media. The main purpose of the consultation was to provide a forum for continuous reflection and debate for the people who are engaged in the promotion of patient's rights.

The Agenda included the following major issues:

  · overview of patients rights in the European region
  · the experience of the Nordic countries;
  · legislation and softer rules;
  · mechanisms to tip the balance;
  · indicators for measuring improvement;
  · quality
  · complaint process;
  · the role of the associations of health professionals;
  · the role of patients organizations;
  · How to determine that patients rights are improving and what that means to patients.

Specific attention was devoted to issues like the generic definition of the concept; negative and positive rights, or "the rights emanating from something" and "the rights to do something"; legal rights (in well defined areas, entailing the right to appeal to court and seek compensation in the case of violation); quasi rights (provisions on the obligations of the healthcare personnel); non    -legal policy documents like Patients' Charters and policy documents where the right is mostly moral in nature), etc. The name was changed     - European Partnership for Patients Rights and Citizen Empowerment (EPPRCE).

On European level, the latest document of biggest importance with respect to patients' rights is the Recommendation on the Development of Structures for Citizen and Patient Participation in the Decision    -Making Process affecting Health Care adopted by the Committee of Ministers in February, 2000. )

The Recommendation was developed in compliance with a number of international documents: European Social Charter, the Convention for the Protection of Individuals with regard to Automatic Processing of Personal Data, the recommendations on the development and implementation of quality improvement systems in health care, Health 21 Program of the WHO, the Jakarta Declaration on Leading health Promotion into the 21st century (1997), etc.

It is a recognition of the fact that the health care system should be patient    -oriented and ensuring the participation of the citizens in decisions regarding their health care.

The governments of the member states were recommended to ensure that citizens' participation apply to all aspects of the health care system at national, regional and local level and create legal structures and policies that support citizen participation and patients rights. To this end specific guidelines were drafted which covered four areas:
  · Citizen and patient participation as a democratic process;
  · Information
  · Supportive policies for active participation
  · Participation mechanisms

Citizen and Patient Participation

  · The right of the citizens and the patients to participate in the decision    -making process affecting health care must be viewed as a fundamental and integral part of the democratic society.
  · Governments should develop policies and strategies which promote patients' rights and citizen participation in the decision making process in health care;
  · Patient/citizen participation should be an integral part of health care system and indispensable component of the health care reforms;
  · Decision    -making should be made more democratic by ensuring:
    - Clear distribution of responsibilities;
    - Appropriate influence of all interest groups, including civic associations active in health care, and not only of some stake holders (professionals, insurers)
    - Public access to political debates;
    - Preemptive citizen participation, not just resolving problems
  · Public debates should be more widely used to strengthen participatory mechanisms.

Information

  · Wide dissemination of information on health care and the mechanisms of decision making, on timely basis and understandable language.
  · Regular information campaigns (hotlines);
  · Adequate referral systems for patients who would like additional information with regard to their rights and existing enforcement mechanisms.

Supportive policies for active participation

  · Governments should create the environment that supports citizen participation by:
    - Instituting and strengthening mechanisms and structures for such participation; listening to patients and citizens should become a constant concern of the whole health care system at all levels (regional, national);
    - Support to the democratic procedures for nominating and selecting citizen representatives in health boards, ethics committees, advisory bodies or any other structures in charge of health oriented decisions;
    - Involving citizens and patients in the management of different structures of the health care system
    - Introducing ongoing evaluation of the participatory process;
    - Eliminating financial, geographical, cultural and linguistic restrictions;
    - Additional assistance to vulnerable groups;
    - Endorsing education and training for democratic participation.
  · Governments should adopt policies that create a supportive environment for the growth in membership, orientation and tasks of civic organizations of health care users by:
    - Creating the legal basis for citizen participation in the management of health care facilities and insurance companies;
    - Creating favorable conditions both in the legal and fiscal system for the founding and operation of such organizations; the health budget, as far as possible, should include allocations to support such organization;
    - Stimulating cooperation between organizations;
    - Facilitating the provision of services and support by these organizations;
    - Granting these organizations a role in providing information to their members and the general public;
    - Encouraging democratic and ethical debates;
    - Developing transparent and open relationship between public authorities and associations.
    - Training and research programs on patient participation, in consultation with the NGOs.

Participation mechanisms

 § Citizens should participate I the legislative process in health care: in the drafting of laws, their implementation and follow up, through participation in commissions and public debates;
 § Citizens should have say in setting priorities in health care;
  · Patients' viewpoints and expectations should be taken into account when assessing the quality of health care. Patients should have say in the evaluation via patients associations and contracts with service providers should contain a binding clause to this effect;
  · Patients and their organizations should be granted access to adequate mechanisms for enforcement of their rights; conciliation and mediation procedures should be introduced as well as formal complaint procedures; Financial barriers to equal access should be removed (free access or subsidizing people with low incomes
  · Systematic collection and analysis of patient's complaints should be used to gather information on the quality of health care as an indication for areas and aspects that need improvement.

Europe is undergoing major political, social and technological changes, which call old solutions into question, reveal fresh potential and raise new challenges for the future.

The main challenge facing Europeans remains to ensure harmonious and prosperous development within each member State and within the European continent as a whole.

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Strategies for promoting patients' rights

Even if a standard approach is not possible for implementation of patient's rights, it is important that a set of basic principles to be made available to countries. This could be the beginning of common strategy in terms of:

    1. Education and information for promoting patients' rights
        · the first right of the patient should be to know about patients' rights
        · the promotion of patients' rights starts and ends with the education of health professionals.

    2. Cooperative strategies for promoting patients' rights
        · the role of patients'/consumer organizations is crucial in implementation of the principles of patients' rights
        · possible partners in promoting patients' rights could be: the mass media, unions of health professionals, church groups, schools, health insurance companies, parliamentarians and political parties.

    3. The right to care
        · definition of the content of good health care
        · development of parameters about the quality of healthcare services.

National situations vary in respect of legal frameworks, health care systems, economic conditions, and social, cultural and ethical values, but there are certain common approaches which can be appropriately adapted to the circumstances of each country. The implementation of strategies need most or all of the following component:
    · legislation or regulations, specifying the rights, entitlements and responsibilities of patients, health professionals and health care institutions
    · medical and other professional codes, patient's charters and similar instruments, drawn up in the light of agreed common understandings between the representatives of citizens, patients, health professionals and policy makers
    · networking between and among patient and health care provider groups
    · government support for the establishment and effective running of NGOs in the field of patients' rights
    · national colloquia and conferences to bring the parties together to create and promote a shared sense of understanding
    · involvement of the media in informing the public, stimulating constructive debate and sustaining awareness of the rights and responsibilities of patients and users and their representative organs
    · better training in communication and advocacy skills for health professionals as well as for patient and other user groups, in order to further the development of a proper understanding of the perspective and role of all parties.

Consensus building - a new social deal on health:

A new social deal on health and society is needed, with the commitment not only by the health sector, but of all other sectors involved, with the empowerment of individuals to look after their health and the participation of all the protagonists in order to achieve equitable distribution of scarce resources, thereby eliminating exclusion. Limited funds should be used in the most effective way.

A new social deal should therefore ensure that equity and patients' rights issues become an integral part of health care systems and address a number of important issues at the patients' level, at the level of health care delivery as well as at the governmental level: a tripartite social deal between patients, providers and payers.

For this purpose, governments should strengthen the institutions and instruments of political and social dialogue between these partners to give them equal opportunities to mobilize public opinion, and to promote social entrepreneurship.

The deal would address explicitly a number of important issues:

    · Citizens' and patient' participation

Goal: to promote a democratic participation in the conception, building-up, reforming and functioning of a health system
Citizens and patients should be actively involved in the process of deciding how health care and health promotion actions are to be organized and controlled. Appropriate health care implies shared rights and shared responsibilities. Trust in the health professional - patient relationship contributes to an individual's health and to speedy recovery; respect of the rights of the patients by the health professionals increases the commitment and responsibility of the patient. The more people are aware of their autonomy, of their right to decide and make choices, the greater is a need for patients' participation in improving quality and appropriateness of care.

Action - at an individual level:
    *promote active involvement in health matters, dialogue between professional corporate organizations and patients' organizations, balancing rights and responsibilities.

        - at an institutional level (health care delivery):
    *actively involve the patient in the health care process by providing appropriate information and by presenting alternative treatment methods;
    *secure respect of rights of the patient ; accountability and transparency; effective complaint procedures;
    *fostering patient participation in setting standards of quality of care.        

        - at a governmental level:
    * promote the democratic participation of the patient in developing health policy through legislation, funding and other appropriate instruments;
    * promote training and education programs of health care professionals which encompass the perspective and the role of the patient.

    · Equitable access to health care services

Goal: to achieve solidarity by balancing the right to health care and financial constraints, ensuring basic coverage from the perspective of a health care policy, equal access to health care and equal treatment of all patients and addressing the needs of the most disadvantaged groups of the population

Equity has to be an integral part of health systems in European democracies, as it is indispensable in making rational and fair choices about health policy and health aspects of other policies.

The Government has a responsibility to ensure a healthy social and economic environment, provide the structures and mechanisms to prevent illness and promote health and guarantee equal access to affordable health care, with special regard to the more vulnerable groups of the population. It must seek to monitor and eliminate the socio-economic inequalities arising from the health status of the individual and the unreasonable differences in access to care which may arise from the deterioration of socio-economic situations.

Action: - At an individual level:
    * increase patient awareness on their rights and possible role in reducing inappropriate recourse to health services, (including mediatisation and over consumption), as they are counterproductive to the health of the individual, to solidarity and to equitable access;

        - At an institutional level (health care delivery):
    * organize the participation of health personnel in promoting health and improving health care delivery;
    * introduce standards of appropriate care through consensus on practice guidelines and protocols, in order to promote medically appropriate and financially responsible health care delivery based on solidarity ;
    * develop instruments to optimise cost-containment and cost-effectiveness through monitoring-instruments, through accountability and by applying evidence-based medicine;
    * treat every patient in a non-discriminatory way.

        - At a governmental level:
    * develop policies based on the approach to health care as a social good rather than as a private commodity;
    * define essential health needs and guarantee a package of health care on the basis of health policy requirements;
    * ensure that equity and social justice takes priority over narrow-minded definition of cost containment;
    * develop an equity monitoring system, introducing an equity audit as a systematic activity in all health-related activities;
    * balance as best as possible priority setting for health against budgetary restrictions;
    * ensure equal status for patients in the health care and social protection system;
    * develop instruments to ensure that health-care delivery is adapted to the needs of the patient thus avoiding unjustified over utilisation;
    * reconsider redistribution of health services according to need;
    * adapt health care structures in order to achieve flexibility and diversity of health care services, thus stimulating autonomy of the patient as well as cost-effectiveness and allowing for the facilities to be geared towards the needs of the patient instead of the interest of the health care provider;
    * develop if necessary health information systems which permit the achievement of certain strategies.

    · A better health status for the social well-being of the population

Goal: to re-evaluate the importance of the health policy field in the present economic environment and strengthen the position of health care vis-ŕ-vis other policy fields.
This goal must be pursued at several different levels by:
    - redefining, where necessary, the role of governmental authorities, including that of other ministers, whose decisions have an impact on health, in order to create healthy environments and to improve the health of citizens;
    - redefining the role of ministers of health, strengthening their position and their coordinating role at the governmental level in order to let them better respond to the expectations of the society;
    - increasing consciousness of the contribution made by investment in health promoting environments and public health policies towards the success of the social and economic policies;
    - encouraging people in their different roles as citizens, users, consumers, clients and patients to be the agents of their own health, both in organizing their living conditions and in establishing their relations with the medical profession and the institutions responsible for health. This is all the more true for the chronically ill and dependent persons, who have to be given new opportunities to help themselves;
    - empowering individuals means applying a subsidiary principle with respect to health: as much State intervention as necessary, but only when the individual responsibility and autonomy has been defined and agreed.

Action: - At an individual level:
    * encourage, through active discussions, reassessment of values of health for the individual and society;
    * increase awareness of citizens' and patients' responsibilities and choices towards individual health and promote healthy life styles.        

        - At an institutional level (health care delivery):     * prevent as far as possible obstacles to social functioning stemming from the health status of the individual; santé;
    * acknowledge the role of primary health care and other health professionals as vehicles for change and as health agents of their clients;
    * increase consumer satisfaction by increasing freedom of choice where affordable;
    * increase providers' satisfaction by offering them professional freedom where appropriate.        

        - At a governmental level :
    * develop an assessment system of the health impact of other policies, based on a systematic "health audit" as complementary to the financial audit and cost accounting of the health policies;
    * take appropriate action in order to prevent that the economic consequences of adverse health effects of other policies are shifted to the health sector;
    * develop policies, which reduce inequalities in health matters among the population;
    * promote prevention;
    * introduce innovative preventive, curative, and care programs including an integrated approach to care services, including the psycho-social perspective;
    * take appropriate actions in other fields of the society in order to make health and health promotion of the population a dominant determinant in all legislative and decision making activities in all fields of society;
    * encourage, where necessary, the involvement of local and regional authorities and institutions in the promotion of a healthy environment and of a health system of quality.

        - At all levels:
    * promote, facilitate and support active involvement of Non-Governmental Organizations as protectors of the patients' rights, promoters of equity and as embodiment of the idea of a civic society;
    * encourage creating a European-wide network of national Non-Governmental Organizations;
    * encourage the involvement of the media in prevention and health promotion;
    * encourage the exchange of information in priority setting among member States.

This exercise should create a permanent forum, where the three pillars of the Council of Europe's ideals would be put into practice: democracy, rule of law and respect for human rights.

In particular, the Council of Europe should consider building up a network for an exchange of information between member States on
    - patients' rights and patient participation;
    - the role of lay persons in promoting health in their own environment;
    - the exclusion of certain groups of patients, in particular the chronically-ill, and people with disabilities from society;
    - the involvement of the scientific community in a setting effecting treatment and procedures.

Towards an affordable health strategy for Europe

The Council of Europe ideals of human rights and ethics-oriented policy should influence and change the practice of politically governed policies.

Health is not merely a product of a health care service. It requires people to take more individual responsibility. It also requires greater control over policy development in all the domains, which may influence health determinants (lifestyle, economic, social, education, transport, labor, housing etc.). Health issues should be put high on the political agenda of each member state and become a vehicle for common European action. A better social and political marketing for health should serve this purpose. This would be difficult without establishing clear leadership for health development.

The Council of Europe as an organ of cooperation between sovereign States brings them together to provide a forum for raising their health standards in democratic structures. This forum could also be used to open a permanent political dialogue among health ministers on essential questions facing health care policies. There is a need to develop new strategies and structures for rapid and efficient international and interregional cooperation in health care. The Council of Europe long-term, intergenerational accountability should be reflected in its future work program, targeting on priority aspects and patient participation.

International organizations active in the field of health should work closer together and seek synergism in their quest for a coherent European health agenda.

In this way a "health crisis" could be turned into a "healthy crisis" - one which mobilizes, generates innovative solutions applicable to the challenges of today and opens new venues for tomorrow. Furthermore, the social justice, human rights and ethical dimensions of health care could help us to understand that an investment in health is an investment into people, the biggest asset society can have. This is the best possible investment for the future.

Health has become an indispensable prerequisite of individual and social well being, like peace being a prerequisite for well being of the nations of Europe. Health is an indicator of the general success of socio-economic policies, a predominant factor in a civilization's progress.

Investing into health means investing in human capital, investing in a future for democracy, in a future Europe.

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References

    1. "The rights of patients in Europe - A comparative study", by H.J.J. Leenen (professor of social medicine and health law, University of Amsterdam), J.K.M. Gevers (professor of health law, University of Amsterdam), G. Pinet (WHO, Copenhagen), Promotion of the rights of patients in Europe, WHO, 1995 2. "Health and health care in the Netherlands", A.J.P.Schrijvers (ed), 1997
    3. International digest of health legislation vol.1-48, WHO, 1995
    4. Council of Europe, Committee of Ministers; Recommendation No 5 of the Committee of Ministers on the development of structures for citizen and patient participation; 24 Feb, 2000, 699th meeting of the Ministers' Deputies
    5. Universal Declaration of Human Rights, 1948
    6. European Convention of Human Rights, 1950
    7. European Consultation on the Rights of Patients convened under the auspices of the WHO Regional Office for Europe (WHO/EURO) and hosted by the Government of the Netherlands (28-30 March 1994)
    8. The fifth conference of European Health Ministers held in Warsaw (7-8 November, 1996) passed under the title of Social Challenge to Health: Equity and Patients Rights in the context of health reforms
    9. The European Health Committee (CDSP), 40th meeting (Strasbourg, 26-28 November 1996); TERMS OF REFERENCE
    10. Patients Rights Network, meeting in Copenhagen (22-24 April 1999)
    11. European Social Charter
    12. Convention for the Protection of Individuals with regard to Automatic Processing of Personal Data, the recommendations on the development and implementation of quality improvement systems in health care, Health 21 Program of the WHO
    13. Jakarta Declaration on Leading Health Promotion into the 21st century (1997)
    14. 45th session of the European Health Committee (CDSP), Strasbourg (29-30) June, Recommendation to Member States to ensure that citizens take an active part in decision making process in health care.
    15. Patients Rights network -- European Partnership for Patients Rights and Citizen Empowerment (EPPRCE), WHO Regional Office for Europe in Copenhagen (22-24 April, 1999
    16. 46th session of CDSP, Strasbourg, December, 1999
    17. EPPRCE Network, Jerusalem, Israel, 24-26 May, 2000
    18. 13th World Congress on Medical Law, Helsinki, Finland, 6-10 August
    19. Web sites related to the topic:
       · http://www.minnws.nl
       · http://www.spin.nl/npcf1001htm
       · http://www.stakes.fi/medlaw
       · http://thomas.loc.gov/cgi-bin/query
       · http://www.senate.gov/~dpc/patients_rights/index.html
       · http://www.familiesusa.org
       · http://www.aarp.org/
       · http://www.aha.org/resource/pbillofrights.html
       · http://www.cnn.com/HEALTH/9807/15/hmo.docs.prognosis/index.html
       · http://www.cnn.com/HEALTH/9807/15/patients.rights/
       · http://www.cnn.com/HEALTH/9709/24/nfm.hmo.protection
       · http://japan.cnn.com/ALLPOLITICS/stories/1999/07/09/clinton.health/
       · http://thomas.loc.gov/home/thomas.html

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