Participation is a right situated at the very heart of the human rights vision. Participation holds this central place because it requires and activates the full range of other human rights. People can only fully exercise their right to participation if they are correctly informed and free to express their views on the situation in which they live, the priorities that should be emphasized, the actions to be taken, and the way in which those actions should be implemented, followed-up, and evaluated.

My experiences as a manager of national public health programs has taught me that no solid, lasting progress in health is possible without applying the principle of participation. I would like to illustrate this point through several examples that have an impact on my daily work.

In 1994, the genocide in Rwanda completely devastated our health system. The infrastructure was destroyed. Human resources were drastically diminished by the massacres and by the departure of people who either feared being killed or were taken hostage by the genocidaires as they fled.

Today, 15 years later, we still have a long road ahead, to build the optimal health system for our country. We are far from declaring ourselves satisfied. However, we have managed not only to recoup the losses of the genocide period but to improve substantially on what existed before 1994.

Our health indicators show that we are on the right path in our construction of a robust health system based on the principle of universal access to health, with a special focus on the most vulnerable individuals.

Presently, in Rwanda:

• Health insurance now covers 92% of all Rwandans, including 83% at community level;
• The uptake of curative care has tripled;
• Vaccination now covers more than 90% of children;
• Malaria mortality has been reduced by 2/3; and
• 70% of HIV-positive people in need of ARV treatment are receiving it.

To reach this result, we have relied on the effective contribution of all of our people — thus we have relied on participation.

The involvement of all stakeholders means that communities, civil society, and both the private and public sectors are involved.

For the community sector, participation is enabled through massive information campaigns on the right to health and through training. We raise awareness about people’s responsibility to participate in goal setting, decision making, and the fight for transparency and against corruption. The goal is for each dollar to buy the greatest possible amount of health while respecting equity.

This is written into Rwanda’s Community Health Policy: “Community Health is seen as a holistic and integrated approach that takes into account the full involvement of communities in planning, implementation and evaluation processes, and assumes communities to be an essential determinant of health and the indispensable ingredient for effective public health practice.”

The principle of participation is also applied in the public sector. The public sector departments of education, infrastructure, roads, energy, water, finance, social issues, gender, foreign policy, cooperation, and so forth must all participate actively in the work of the health sector if we want health action to respond effectively to demand. The requirement for participation is included in the “Manual of Procedure of the Ministerial Cabinet,” which stipulates that no policy, ministerial instruction, or legislative proposal can be discussed in the Cabinet without ensuring that all those constituencies who may be affected have been informed and have actively participated in developing the proposal to be discussed.

With civil society and the private sector, the lessons drawn from their active, synergistic participation in the response to the HIV pandemic have recently been expanded to the whole of the health sector.

The fight against HIV/AIDS is based on the concept of GIPA: “Greater Involvement of People Living with HIV/AIDS: Never do for us without us.” In each of nine sub-sectors — PLWHA, faith-based organizations, community-based organizations, transportation, media, the private sector, people living with disabilities, and young people and women — Rwandan NGOs have formed what we term “umbrella” groups to enable and coordinate participation. These groups have identified representatives who can speak for their interests in each district and at the central government level.

Today, the nine umbrella organizations involved have transformed themselves into “Umbrellas for the fight against HIV/AIDS and the promotion of health.” Their representatives participate in decision making, planning, follow-up, and the evaluation of health sector activities at the district and central levels.

We all know that a healthy population accelerates development. I hope that I have been able to show you why, on Rwanda’s path to development, the urgency of action makes the principle of participation in the health sector indispensable. Health is also coordinating with other sectors. For participatory efforts to be effective and sustainable, they must be anchored institutionally and taken forward using a multi-sectoral approach.

In my Critical Concepts article in the forthcoming issue of Health and Human Rights, “Suffering and powerlessness: The significance of participation in rights-based approaches to health” (available online in PDF or HTML format), I refer in passing to a sweeping judgment by the Court in July 2008. This ruling, in taking seriously the enforceability of the right to health, called for the government to restructure that country’s health system. However, recognizing that it did not have the expertise or legitimacy to determine which treatments and services should be included in the social insurance scheme, the Court called for a broad participatory process to determine the content of a newly revised and unified benefits scheme. In a Perspectives piece in this issue, “Democratic deliberation or social marketing?” (PDF, HTML) which is forthcoming in Spanish in a Colombian journal, my co-authors and I explore in much greater detail the degree to which the Colombian government has met the criteria for participation set out by the Court. We conclude in large measure that it has not and that, as a consequence, the reforms being put in place are at risk of not being accepted by the Colombian public. In turn, people may continue to flood the courts with lawsuits that undermine the financial sustainability of the system, although this is precisely the result that the Court’s structural judgment sought to avoid.

The case of Colombia puts into sharp relief the potential strengths and limitations of a court-initiated process of health reform that calls for — and indeed requires — meaningful participation in a context of relatively low social mobilization and a highly autocratic regime. Furthermore, it vividly illustrates both what is at stake in defining participation, and the risks of participatory processes that serve only to provide a patina of legitimacy to decisions taken beyond any public decision-making arena. We are flooded with new forms of “rights-based participatory mechanisms” all the time in public health — for example, “observatories,” “round-tables,” and “multi-sectorial committees.”  Yet we must not uncritically accept these as advances in rights-based approaches to health lest rights-based approaches devolve into the same kinds of feeble, managerialist participation that have plagued health and development arenas for decades and do nothing to genuinely empower those who are most marginalized.