From community as data providers to data users: developing a community-led research platform using routine program data in Kenya

Abstract

Community-based organizations (CBOs) are critical in providing trusted and tailored HIV/STI services to gay, bisexual, and other men who have sex with men (GBMSM). Despite significant strides in CBO involvement in HIV/STI research in Kenya, there remain gaps in meaningful engagement and capacity-building, especially quantitative research. We share our experience and lessons learned in developing HEKA (Health Research Intervention Kuthamini Afya Yetu), a community-led research platform where community members are leveraging their routinely collected program data to design research aimed at strengthening HIV/STI programs. HEKA focuses on building capacity and quantitative scientific literacy within CBOs.

Guided by the program science framework, an iterative, bi-directional framework linking research and program implementation, our seven CBOs identified areas for quantitative skills development and together with academic partners, established interactive learning activities through a workshop and set a common research agenda for future steps. The collaborative process centered around applying the skills learned to appraise program coverage and its drivers, so as to improve HIV/STI outcomes for the communities we serve.

The workshop included introductory sessions on quantitative research methods, data structures, and R programming (an open-access software environment for data management and analysis). We also maintained engagement through a new online group where we have met monthly. Through our experience, we learned that using a co-leadership framework where research direction evolves through shared/delegated leadership between staff from the different organizations and peer-to-peer mentorship was instrumental to our success. However, we encountered some challenges in the process, including sustainability of funding to maintain engagement. Other challenges have included balancing varied learning paces due to diverse staff roles, navigating a volatile socio-political climate with regard to GBMSM issues, and long commutes for in-person meetings. Competing demands from program funders, such as stringent monthly reporting requirements amongst these, have also contributed to delays in participation.

Despite these challenges, HEKA demonstrates the potential for community-based and led research in the HIV/STI field. Our experience can serve as a model for other CBOs aiming to lead collaborative or independent research and build capacity.