From community as data providers to community as data users: developing a community-led research platform using program data in HIV/STI Program Science in Kenya

Abstract Background Community-based organizations (CBOs) are critical in providing trusted and targeted HIV/STI services to gay, bisexual, and other men who have sex with men (GBMSM). Despite significant strides in CBOs’ involvement in HIV/STI research, there remain gaps in meaningful engagement, especially in quantitative research. This paper explores the development of HEKA, a community-led research platform where community-based organizations build capacity and leverage routinely collected program data to design research that aims to improve HIV/STI programs. We share a collective reflection on the lessons learned in the process, the challenges that emerged, and recommendations for facilitating community-based program science. Methodology Through a collaborative process, seven CBOs serving GBMSM in Kenya created the HEKA Research Initiative and designed a framework of collaboration, through which we assessed the technical gaps in quantitative research among staff, applied for funding, co-designed capacity-building workshops with academic partners, and developed a research agenda. We established a monthly meeting frequency and through collective reflection, documented the lessons and challenges in the process. Outcomes With our successful grant, we organized an in-person workshop on quantitative research methods and R programming. The team identified research questions and completed data cleaning/harmonization of program data. HEKA was successful because we emphasized a co-leadership framework (research direction evolved through shared/delegated leadership), and peer-to-peer mentorship. Major challenges included: obtaining sustained funding for engagement; ensuring the learning pace allows all individuals to be on the same page; confronting the socio-political climate; long commutes between counties for in-person meetings; and the limitation in using Excel files as primary tools for data capture. Conclusions HEKA demonstrates the potential for community-based and led research in the HIV/STI field. The model we present can serve as a blueprint for other community-based organizations aiming to lead collaborative or independent research and build capacity.