How is inclusiveness in health systems research priority-setting affected when community organizations lead the process?

Community engagement is gaining prominence in health research. But communities rarely have a say in the agendas or conduct of the very health research projects that aim to help them. One way thought to achieve greater inclusion for communities throughout health research projects, including during priority-setting, is for researchers to partner with community organizations (COs). This paper provides initial empirical evidence as to the complexities such partnerships bring to priority-setting practice. Case study research was undertaken on a three-stage CO-led priority-setting process for health systems research. The CO was the Zilla Budakattu Girijana Abhivrudhhi Sangha, a district-level community development organization representing the Soliga people in Karnataka, India. Data on the priority-setting process were collected in 2018 and 2019 through in-depth interviews with researchers, Sangha leaders and field investigators from the Soliga community who collected data as part of the priority-setting process. Direct observation and document collection were also performed, and data from all three sources were thematically analysed. The case study demonstrates that, when COs lead health research priority-setting, their strengths and weaknesses in terms of representation and voice will affect inclusion at each stage of the priority-setting process. CO strengths can deepen inclusion by the CO and its wider community. CO weaknesses can create limitations for inclusion if not mitigated, exacerbating or reinforcing the very hierarchies that impede the achievement of improved health outcomes, e.g. exclusion of women in decision-making processes related to their health. Based on these findings, recommendations are made to support the achievement of inclusive CO-led health research priority-setting processes.