Participation and the right to health: lessons from Indonesia.

The right to participation is the "the right of rights"--the basic right of people to have a say in how decisions that affect their lives are made. All legally binding international human rights treaties explicitly recognize the essential role of participation in realizing fundamental human rights. While the substance of the human right to health has been extensively developed, the right to participation as one of its components has remained largely unexplored. Should rights-based health advocacy focus on participation because there is a relationship between an individual's or a community's active involvement in health care decision-making and the highest attainable standard of health? In the context of the human right to health, does participation mean primarily political participation, or should we take the right to participation to mean more specifically the right of persons, individually and as a group, to shape health care policy for society and for themselves as patients? Decentralization of health care decision-making promises greater participation through citizen involvement in setting priorities, monitoring service provision, and finding new and creative ways to finance public health programs. Between 1999 and 2008, Indonesia decentralized health care funding and delivery to regional governments, resulting in substantial exclusion of its poor and uneducated citizens from the health care system while simultaneously expanding the opportunities for political participation for educated elites. This article explores the tension between the right to participation as an underlying determinant of health and as a political right by reviewing the experience of Indonesia ten years after its decision to decentralize health care provision. It is ultimately argued that rights-based advocates must be vigilant in retaining a unified perspective on human rights, resisting the persistent tendency to separate and prioritize the civil and political aspects of participation over its social component.