A framework for understanding and strengthening collaboration with Indigenous populations in epidemiological research: insights from a scoping review

Background Indigenous Peoples have historically been subjects of research designed and carried out by outside researchers, with limited influence over how findings are used or shared. Community research governance, understood as the set of processes through which communities exercise real authority over research decisions, has been increasingly recognized as essential for ethical and equitable research partnerships. Despite growing interest, the concrete mechanisms through which communities govern health research information dissemination remain widely undocumented. Objective This scoping review aimed to map existing evidence on community research governance practices in health research information dissemination conducted with Indigenous Peoples. Methods We followed the methodological framework developed by Arksey and O’Malley and refined by the Joanna Briggs Institute, and reported according to PRISMA-ScR guidelines. We searched PubMed, Web of Science, and Google Scholar for studies published between January 2010 and December 2025. Using Arnstein’s ladder of citizen participation as our theoretical framework, we included studies involving Indigenous communities that documented participation at the level of Partnership, Delegated Power, or Citizen Control. Data were analyzed using an iterative thematic synthesis approach. Results Across the included studies, five thematic blocks emerged: consultation and consent, feedback and validation, control and decision-making, cultural protection, and capacity building and sustainable collaboration. The majority of studies came from Australia, New Zealand, Canada, and the United States. Documented practices ranged from dynamic consent mechanisms and community validation of results to Indigenous data sovereignty frameworks, committees with veto power, and co-designed research tools. Conclusions Community research governance of health research with Indigenous Peoples is possible and has been implemented in diverse ways. The five thematic blocks provide a systematic map of governance practices that can serve as a reference for researchers and institutions seeking to strengthen community authority over research.