Whose Knowledge Governs?: Community Power and Health Equity

Brazil’s democratic renewal emerged after two decades of dictatorship. During the transition, health activists and community organizers pushed to institutionalize a participatory decision-making structure to prevent power from reconsolidating. In health, they sought a system where communities could shape policy priorities and hold public institutions to account.

The result was an innovation in deliberative democracy: a network of health councils at municipal, state, and national levels. Here, community members, professionals, and government representatives meet to review health plans, monitor public health outcomes, and approve budgets. These councils hold statutory authority. By law, half of all council seats must be held by community members. Crucially, councils have the power to withhold approval of a mayor's annual accounts until their concerns are addressed.

This arrangement transforms participation into a formal information pathway, whereby local experience and budgetary decisions are documented, debated, and used to steer national priorities.

For example, one of the successes of the participatory architecture was the recognition of Indigenous medicine in the health care system. In 1986, Indigenous leaders and the Union of Indigenous Nations convened the First National Conference on Indigenous Health. The document they produced became the cornerstone of a dedicated health subsystem established thirteen years later, which established differentiated care and, importantly, the independent collection of health data according to Indigenous territories rather than municipal boundaries, which often split communities and obscured the communities’ health trends.

More recently, at the 17th National Health Conference in 2023, more than 4,000 delegates - most of whom had risen through local and state councils - met in Brasília and voted on more than 1,000 proposals to shape the national health agenda.

As Zoheb Khan, a researcher at the Brazilian Center of Analysis and Planning (Cebrap), explained, the design makes community voices difficult to dismiss. “The council needs to have minutes. They need to be published. They need to be online. They need to approve the budget,” he said, “If you have those rules in place, it’s much harder to ignore them.”

While Brazil built participation into its state infrastructure to articulate, prioritize, and monitor progress toward addressing community needs, South Africa’s Soul City soap opera championed a community-centered approach to health information for the most disadvantaged through the power of narrative.

Founded in 1992 as South Africa transitioned to democracy, the Soul City Institute, in partnership with Alexandra Clinic and University Health Centre, addressed a critical gap: accurate health information about HIV/AIDs. In the 1990s and early 2000s, South Africa had one of the highest HIV prevalence rates in the world. With government’s mixed messaging on the disease, Soul City became a vital and trusted source of accurate information, bypassing political bottlenecks.

As a national health promotion organization, the Institute’s education-entertainment (i.e. “edutainment”) strategy integrated accurate health information into popular prime-time dramas. However, Soul City was more than a TV show - it was a social mobilization movement which successfully reached 70% of South Africans.

The popular series involved a 13-part television drama, a 45-part radio drama in nine languages, and nationally distributed booklets, while also incorporating advocacy and community activities beyond the screen, such as the Soul Buddyz Clubs for children from 8 to 14 years old and the RISE Young Women’s Club. These clubs generated a form of evidence that formal health systems rarely produce: community-defined knowledge about needs, missing services, and routinely violated rights.

The aim was not about simply getting the message out. Soul City took up a "Jamboree" model designed to bring discussions or services (e.g. health screenings) directly to people, serving as a platform for listening and serving, especially in disadvantaged areas.

Over time, the show’s plot adapted and responded to issues raised and faced by communities. For example, in response to community experiences with domestic violence, the institute scripted a dedicated storyline and launched an abuse helpline receiving over 180,000 calls, while supporting the establishment of the Domestic Violence Act.

The effectiveness and popularity of Soul City also relied on an iterative 18-month development cycle involving expert and public consultation and feedback loops with communities on the script, which was later followed by an independent impact evaluation after distribution and broadcast. While the Institute engaged communities through the consultative and evaluative process to develop a methodically crafted script, it also actively sought to create dialogue and encourage agency.

Phinah Kodisang, CEO of Soul City, described the 30-year legacy as carrying health information into places formal systems have not yet found a way to carry itself - using the act of storytelling to tell people what they are owed and how to ask for it.

"Hopelessness is not a choice for us" - Phinah Kodisang

In the face of structural inequity, one question keeps resurfacing: How can societies reimagine information pathways to incorporate lived experience and community needs? Brazil and South Africa offer two distinct and insightful responses.

Brazil approached this question through public sector design. Health councils do not merely invite communities to speak. They offer a formal route for bottom-up priority setting and accompanying monitoring and budgeting information to render accountability transparent.

Soul City approached the same question from a mass media perspective. Through narrative, in-depth public and community consultation, and the Jamboree model for change, the Institute galvanized a movement within and beyond South Africa that saved lives during times of misinformation and hesitancy of the public sector to act.

Together, these models show that a people-centered system does not merely feed information to marginalized groups or merely collect information from them; it cedes the power of definition to them and acknowledges their role as knowledge governors. This shift offers the prospect to dismantle structural exclusions by ensuring that those who live with these problems are the ones who define the solutions and hold the power to monitor their progress.