Appendix G:
Excerpt from Health as a Right by Provea

Health policies and the right to participation

Participation has been recognized as a human right in the Venezuelan Constitution (article 114), in the International Covenant on Civil and Political Rights (article 25) and in the American Convention on Human Rights (article 23).

The right to participation is one of the rights that cuts across all human rights, and particularly economic, social and cultural rights. International agencies such as the United Nations Development Program (UNDP) have begun to recognize the importance of this right by stating:

An essential part of any political process to benefit the poor is a high degree of participation. Encouraging the autonomy of citizens is, indeed, an end in itself. And participation is a means to ensure the efficient provision and more equitable distribution of goods and services. If people are involved in decision-making, policies and projects tend to be more realistic, more pragmatic and more sustainable.12

With regard to the right to health, community participation has been highlighted by various international documents as a core ingredient of health strategies. For instance, the Declaration of Alma-Ata stresses that "people have the right and duty to participate individually and collectively in the planning and implementation of their health care."13 The same Declaration further points out that primary health care "requires and promotes maximum community and individual self-reliance and participation in the planning, organization, operation and control of primary health care, making fullest use of local, national and other available resources; and to this end develops through appropriate education the ability of communities to participate."14

Participation should not be limited to primary health care or to small-scale community projects. On the contrary, the right of the population to participate in various aspects related to health also implies:

A clear national policy may be reached, and even appropriate legislative and budgetary measures, to ensure that individuals and communities can participate actively in deciding on health policy and in guiding the planning, management, and control of the health infrastructure and the programs it delivers. Existing mechanisms may be used, or new ones may have to be created, to make it possible for people to express their views on their community's or country's health system, to take decisions concerning the scope of individual and community involvement in ensuring certain elements of primary health care in the health and related sectors, to control primary health care in the community in which they live, and to participate actively in the control of other levels of the health system. To fulfill such responsibilities people have to be well informed; to inform them will be an important function of health personnel, who form part of the community and country in which they live and work.15

This same right to participation in health matters is recognized in articles 5 and 8 of the [Venezuelan] Organic Law on the National Health System (LOSNS) (Ley Orgánica del Sistema Nacional de Salud). The Presidential Commission for State Reform (Copre) (Comisión Presidencial para la Reforma del Estado) proposes three levels of participation in the health sector -- central, intermediate and local -- and suggests that participation should be incorporated into the establishment of priorities, the planning process itself, and the provision of services and evaluation.16

From the above legislation, it is clear that for the development of effective strategies in the health field, participation which is limited to specific stages of decision-making is insufficient. On the contrary, the legislation offers a variety of possibilities for participation including in the planning, evaluation and monitoring phases of health programs. Nevertheless, authorities frequently limit community participation to aspects of project implementation. This fact has been confirmed by the United Nations Special Rapporteur for the Realization of the Economic, Social and Cultural Rights, who indicates that:

While the participation of non-governmental organizations in the World Bank projects has increased in the past three years, in greater proportion, at most, it has referred to project implementation, making much less emphasis on their conception, advising, supervision and evaluation.17

Community participation frequently runs the risk of being arranged by state agencies only as a means to obtain access to international financing and being limited to implementation aspects, thereby achieving only the shifting of state responsibility to individuals rather than the involvement of individuals in making decisions which affect their rights.

The Pan American Health Organization (PAHO) has also confirmed this reality in the health field by stating that:

It is generally agreed that community participation is an essential principle of the primary health care approach, and no declaration on the subject by a national government or an international organization appears to overlook this requirement. However, development proposals generated by remote government officials often ignore these grass-roots systems.18

While it is true that the LOSNS recognizes the importance of community participation in all stages of health policies, it is worth noting that the risk of limited participation exists. Copre underlines that participation "is to be integrated into the process of institutional planning, and is not to be a parallel element, marginal to formal health institutions."19

Participation limited to stages of implementation may lead to the development of "clientele" relationships in which communities feel benefited by being delegated responsibilities of implementation in exchange for expected advantages, such as the use of health centers for community activities. This "clientele" relationship can also have a negative consequence to the extent that communities participating in community health projects can end up renouncing their right to health in a more holistic sense for fear of confrontation with the authorities who "opened the door" for them -- as tiny and irrelevant as that opening may be -- to the co-management of health services.

In this sense, while the population's involvement in hospital boards, administration of public health centers, maternal-infant care programs and other initiatives, constitute legitimate and necessary forms of community participation, they may entail a transfer of responsibilities and/or resources to organized sectors of society which, in turn, may imply that the state is no longer the entity ultimately responsible for the management of such health services. The gaps in the LOSNS on these issues, together with the growing tendency of state agencies to shift their responsibilities to individuals (especially in times of fiscal crisis) may transform participation into a double-edged sword, one that is eventually turned on system beneficiaries.

The complexity of this problem should be approached through the development of a normative framework that clearly establishes the responsibilities of both the organized society and the state in the different stages of health policies, at the community, regional or national levels. As for the holistic nature of community participation in health matters, Copre has recommended that "rules of procedure related to the Organic Law on the National Health System [LOSNS], sufficiently broad but defined, be elaborated in order to permit the precise establishment in all fields of state performance in health, especially with regard to the (...) establishment of specific ways the state involves the participation of the population in the system, granting special relevance to community-based organizations."20 Likewise, this regulation is to approach the problem of decentralization and the impact it may have on the enjoyment of the right to health, related to the transfer of responsibilities, the distribution of resources, the organization of the health system itself, and the possibilities for participation of the population in health matters.21

Finally, it is important to note that the community is to be informed in order for participation to be effective. To assess the political will of authorities in this matter, certain factors are to be considered. Without intending to be exhaustive, the following considerations may be mentioned:

  • Which information do health authorities provide to communities on: a) the type of health agents and factors that may contribute to the deterioration of their health within the context of their location; b) the available human, technical and financial resources for attending to the health needs of that community; c) the types of health care centers available and criteria for access to them?

  • Which mechanisms have the authorities implemented to secure the community's participation in the planning of health services in its area and in the country in general?

  • What kind of information do authorities offer about the proportion of resources used in primary health care, as compared to those used in curative programs, and what is the capacity of the community to influence the distribution of such resources?

  • What mechanisms of participation have been implemented to ensure that the opinion of the community will be taken into account in the preparation of budgets and in their subsequent control?

  • Are there differentiated mechanisms to guarantee participation, either directly or through representation, of vulnerable sectors (for example, the disabled, people with HIV/AIDS, indigenous communities, peasants, etc.), especially in communities in which members of vulnerable sectors are the majority?

  • What mechanisms for sharing and disseminating information have been created to ensure community participation in responsibilities and commitments of the various health sub-systems and which mechanisms for community participation exist in each sub-system?

From the above, it may be concluded that the right to participation in health matters is one of the most important areas for ensuring the fulfillment and enforcement of the right to health, and one of the least normatively developed. Developing normative frameworks for participation in health matters and providing the population with effective tools for monitoring official health policies is one of the most urgent challenges in the immediate future for the right to health.

12. United Nations Development Program: Human Development Report 1991, Oxford University Press, New York, page 71.

13. World Health Organization, "The Declaration of Alma-Ata, The International Conference on Primary Health Care", 1978, paragraph 4.

14. Ibid., paragraph 7(5).

15. World Health Organization, Global Strategy for Health for All by the Year 2000, Health for All Series No. 3, Geneva, Switzerland, 1981, pages 48-49.

16. Comisión Presidencial para la Reforma del Estado (Presidential Commission on State Reform), Una política social para la afirmacion de la democracia. Caracas, 1989, page 117.

17. United Nations, "Final Report of the Special Secretary of the Human Rights Commission on the Realization of Economic, Social and Cultural Rights" Sub-commission on Prevention of Discrimination and Protection of Minorities. E/CN.4 Sub.2/1992/16, July 3, 1992, paragraph 179.

18. Pan American Health Organization, Economic Support to National Health for All Strategies. Washington, 1989. Page 103.

19. Comisión Presidencial para la Reforma del Estado (Presidential Commission for State Reform), Una política social para la afirmacion de la democracia. Caracas, 1989, page 114.

20. Ibid., page 121.

21. Considering the relatively recent experience of decentralization and transfer of responsibilities in the case of Venezuelan and of the complexities and gaps present in the legislation governing this matter, the topic is not addressed directly in this document, although it will be the object of future research.