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Brazil and Peru pool views of their people to set health agenda
Theresa Braine
Mexico City
Health policy is usually set by politicians and public health officials in consultation with statisticians and epidemiologists. But recent initiatives in Peru and Brazil have pooled the views of the public to create a health agenda that addresses people's needs more closely.
The northern coastal region of Lambayeque in Peru held a referendum last November to ask 123 627 voters to rank health issues in order of importance. Now the authorities there are incorporating this feedback into a five-year plan. Brazil also used a 'trickle-up' approach in 200304, to craft a comprehensive health research agenda based on feedback gathered at hundreds of meetings from the grassroots to national levels.
Planners and participants in both countries said this was no mere communication exercise. Both processes have yielded results already, with new attention being paid to various conditions in Peru and with studies being done in Brazil on threats such as Chagas disease, a parasitic infection that infects 16 to 18 million people in Latin America and kills 50 000 a year.
Residents in Lambayeque ranked their top five health priorities as scarcity and deterioration of water services and waste pickup; marginalization of poor to health services; mental health problems; malnutrition; and maternal health problems.
The exercise, dubbed the "Citizens' Consultation", told authorities where resources would be most useful and gave often disenfranchised Peruvians a voice. It also instilled a sense of responsibility, accountability and commitment among all parties involved, according to Midori de Habich, the head technical advisor to Partners for Health Reformplus (PHRplus), a project of the US Agency for International Development (USAID) that coordinated the ballot initiative.
PHRplus worked with Lambayeque's regional health councils, surveying residents about their health concerns in preparation for the referendum.
Then, through focus groups and workshops, they determined how to measure those needs. Civic organizations, university health experts and others also played a role.
Habich said that Peru had no background in setting policy on mental health, problems of water and sanitation, and marginalization of the poor from health services. But the vote put these concerns at the top of the priority list. Focus shifted from damages, or treatment of existing illnesses, which is costly, to prevention, which can be less expensive. It also drew officials' attention to health-related issues outside the health sector, Habich said.
Community participation was already part of Brazil's political system, with 100 000 people playing roles in 5000 municipal health councils, 27 state health councils and the National Health Council. In July 2003, a government-appointed committee of 20 scientists, health policy-makers and other experts identified 20 subcategories of research. Subsequent meetings were held with more than 500 experts.
The authors of a paper on the project, Setting and Implementing a Priority Agenda for Health Research in Brazil: a Report of a Two-Year Participatory Process, noted that great care was taken to achieve a gender balance as well as representation from all geographic regions in the seminars held after the government-appointed committee.
A preliminary agenda was posted on the Ministry of Health's web site for public comment, and 15 000 people attended local conferences in 307 cities and 24 of 27 states. All this led up to Brazil's National Conference on Science, Technology and Innovation in Health in July 2004, which produced a final health-research agenda.
"As a result of this participatory process, many research topics were added to the agenda and three other sub-agendas emerged," said the paper's authors Reinaldo Guimarães, now vice-president of the Ministry of Health Research Institute (Fiocruz), and Leonor Maria Pacheco Santos, Antonia Angulo-Tuesta and Suzanne Jacob Serruya, who are coordinators at the Ministry of Health's Department of Science and Technology. These included oral health, the health of African descendents and the health of the disabled.
Community involvement "was massive and represented a big challenge", Pacheco said. "For instance the lobby of groups of patients with rare diseases was strong and they were not always completely happy with the results. On the other hand, some scientists who were not used to debate with community representatives had a hard time [communicating] in lay terms ... But, in my opinion, the conference represented a very important democratic learning process."
Calls for proposals were launched for programmes on violence, accidents and trauma; food security and nutrition; hantavirus and similar viruses; health systems and policies; maternal and neonatal mortality; oral health; cardiac stem-cell research; and support for local research ethics committees.
Nearly 1400 proposals were received and 402 financed. One will study 300 cardiac patients with Chagas disease, a parasitic infection that causes heart and other internal-organ damage.
"These patients in general come from very poor areas and would have, otherwise, very limited therapeutic options," said Pacheco. "This research initiative would probably not seem interesting for researchers from developed countries, because the disease is very rare in the North."
PHRplus is organizing referendums in three other regions of Peru, using a system of representation in hard-to-reach jungle areas, Habich said.
Experts said a mix of public participation and epidemiological study is key to accurately assessing health priorities.
"There has been a long debate in development about how to get more public engagement in deciding on what health priorities and health services are needed, both in rich countries and poor countries," said Dr Phyllida Travis, a WHO health systems adviser.
Citing an example in the Oregon, United States, in which residents were asked to choose what they would pay for from a list of health services, she added: "No single approach to setting priorities is sufficient, neither just the epidemiological approach, nor the communities. There are always inequalities in information on both sides of the equation." 