The RISE Study:Bringing Community Participatory Action Research to Life

I added milk and sugar to my coffee and chose a spot at a large wooden table in Casablanca, Morocco. I was joined by 13 other activists and researchers who had traveled from 11 different countries for today’s meeting. The journey had been long for those making their way from Cameroon, Burkina Faso, France, Kenya, Malaysia, Mozambique, Thailand, South Africa, Uganda, and the United States.

We did not speak the same language and had never worked together before, but our task was clear: plan a global research study that would get the attention of the Global Fund to Fight AIDS, Tuberculosis and Malaria. Over the next week we formed a steering committee that worked together across languages and cultures to build a truly community-led study. We co-designed each indicator, discussed each methodological decision, and debated differences of opinions. In my years of research collaborations, I have rarely seen such an impressive display of democracy applied to planning study methodology.

At the end of the week in Casablanca, we had to decide what to call ourselves—after all, every study needs a name. We voted by majority to be the RISE study group, standing for Representation, Inclusion, Sustainability, and Equity in Country Coordinating Mechanisms (CCM) and Global Fund Processes. It was there, during candid discussions over couscous and tagine in early 2023, that we started the journey to bring community-driven data to Global Fund decision-makers.

Over the following year the RISE steering committee collected survey data from over 600 participants and in-depth interviews with nearly 50 additional participants in 83 countries. Achieving data collection of this size is no small feat for an independent community study with no external funding source. The success of study recruitment was owed to the determination of the steering committee and is a testament to the value of the study topic.

Results from the RISE study have caught the attention of a variety of local and international audiences including the Global Fund Secretariat staff in Geneva. The final report from the study was launched during a side event at the Global Fund’s 51st Board Meeting in Geneva on April 22, 2024. The event featured the co-sponsorship and participation of several Board delegations: Canada, Switzerland, Australia, France, Germany, United States, Southern and Eastern Africa, West and Central Africa Communities, Developing Country Non-Governmental Organizations, and Private Foundations. During the event, co-sponsors validated the findings from the study, highlighted their own experiences, and affirmed their support for implementing its recommendations. (In July 2024, the RISE study won the prestigious Robert Carr Research Award.)

As the RISE study group, we are now faced with our next task: make our recommendations a reality. This will require significant effort, coordination, and collaboration from across the Global Fund partnership. We must capitalize on the broad support that we have received from the Global Fund Board, Secretariat, and community to co-design a path forward. As a researcher and an activist who has had the pleasure of being part of the RISE group, I know that now is the time to both reflect on the incredible progress we have jointly achieved and recognize that our work toward the full inclusion of community voices at all levels of the Global Fund is just beginning.

Dr. Sherwood is Director of Research, Public Policy, at amfAR.

Click Here to read more from the July 2024 issue of amfAR INNOVATIONS.

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