Dutch Ethics &
Participatory Research Week 2025

Community/patient/stakeholder participation or engagement is increasingly expected by global health research funders. This mean more opportunities to do participatory research, but has not necessarily led to better outcomes, and has not been matched with critical research to develop informed approaches to participation that benefit community members and/or improve research. In the worst cases, researchers may simply “tack” tokenistic participation elements on to projects they have designed without engaging community members. In this presentation I reflect on my experiences moving from PhD and postdoctoral research, in which I had the freedom to work intensively in participatory partnerships with members of small, community-based organisations, to being employed at a funded research centre with a mandate, funding and interest to do participatory research. I discuss making plans to move beyond engaging relatively large civil society organisations, to more participatory approaches involving members of grassroots community-based organisations, as well as initial experiences. I discuss the challenges encountered, lessons learned and future opportunities. My experiences indicate that there remains limited awareness of the positive impact community participation can have on research design and knowledge creation, by researchers and research funding organisations, who have not had the chance to conduct intensively participatory research. Time and money dedicated to participation in funded research may be too limited or too late to make it meaningful and beneficial for community co-researchers or to noticeably improve research design and execution. Opportunities to access funding for community participation in research, have not yet been matched with critical thinking about, and creative actions to achieve, optimal benefits.

Het KNAW Event ‘Ethics & participatory research: inspiration and creative  reflection on everyday ethical issue’ is onderdeel van de Dutch ethics & Participatory Research Week 2025.