Participation and the Right to the Highest Attainable Standard of Health

From the Introduction: "The right to health places the well-being of people, groups, communities and populations at the centre of a health system. By doing so, implementation of the right can help to ensure that a health system is neither dominated by experts nor removed from the people it is meant to serve. In the context of health systems, this includes active and informed participation in the identification and development of health policy, as well as implementation and accountability."

According to this author, though there are multiple actors in health delivery, the State has the primary legal obligation to guarantee the right to health and develop the institutional mechanisms to ensure that participation takes place. Participation, as described here, "can mean everything and nothing...participation encapsulates a range of meanings; this has given rise to differing practices, merging of ideas and the emergence of new language. The meanings can vary from allowing community representatives a seat at the table where policy decisions are made; to people being involved in agenda setting, analysing problems and participating in decision-making; to a process of democratisation whereby governments become more accountable and responsive to the needs of the disenfranchised; to a cost-sharing exercise contributing toward sustainable programmes. Approaches vary from the ‘top-down’, in which participants are passive recipients responding to professional direction; to the ‘bottom- up’, whereby people identify their priorities and work with government planners and professionals to address them; to a combination of these approaches." Examples are: the monitoring of hospitals, health centres, and health posts in Peru by Quechua and Aymara community women leaders; and monthly women's meetings in Nepal on identifying how women understand maternal and neonatal problems, learning the frequency of maternal and neonatal problems, and joint planning on problem solving.

The author describes a framework and set of illustrative indicators - "which are essential for the effective monitoring and evaluation of participation" - to assist governments with the obligation of participation in health planning. It includes:

• Institutional mechanisms to ensure that people can participate;
• Capacity building for participation (for health policy makers, individuals and groups) where necessary;
• Participation in:
1. setting the agenda for discussion;
2. policy choices;
3. implementation;
4. monitoring and evaluation; and
• Accessible accountability mechanisms and remedies if required.

Barriers to participation include physical and economic barriers to attendance and the legitimacy of representation. Methods of participation include the following:

• Regional and national conferences to develop national health plans
  
• Permanent or time bound forums
• Local health committees or teams
  
• Focus groups and individual interviews
  
• Citizens’ Jury/Planning Cell
• Public meetings
  
• Elected local committees
  

A fair and transparent process of participation includes equal opportunity to start the discussion; ask for clarification, challenge comments, answer questions, and argue; and participate in decision-making. Activities which help ensure an equal voice are agendas setting, rules and facilitation, and fair discussion. Also useful is ensuring that participants understand available information, agree on definitions and the use of jargon, and avoid a hierarchy of knowledge, i.e., placing validity of either personal knowledge or medical knowledge above the other. Illustrative indicators for participation are listed in the document as a series of questions on structure, process, and outcome.

The document concludes with pre-conditions for participation, including the following:

1. a strong commitment and long-term vision on the part of government that the right to health should be incorporated into the day-to-day work of health policy makers;
2. the presence of a national health plan that incorporates the right to health;
3. institutional mechanisms to ensure participation in the development of health policy, e.g., legislation requiring participation and the presence of accessible methods of participation;
4. political will to support, and encourage the involvement of, relevant actors in participation;
5. sustained funding for capacity building for, and the actual costs of participation to ensure that people, including health policy makers, have the knowledge needed to participate; and,
6. the presence of an independent institutional mechanism such as a national human rights institution or health complaints commission with a mandate over the right to health, to develop guidelines for participation, conduct inquiries into participation and respond to complaints about the process.