Examining inclusive research practices to engage communities: a qualitative inquiry

BACKGROUND: Efforts to improve representation of diverse communities in clinical research have progressed, yet suboptimal reach due to lack of language support, mistrust, and cultural misalignment, persist. While research often prioritizes generalizability or recruiting a specific community, a tailored approach is essential to recruit and retain diverse communities. This study aims to illustrate the depth and breadth of existing community-engaged research methods that have been used to increase recruitment and retention of diverse communities. METHODS: Semi-structured interviews were conducted to identify common themes and best practices of inclusive research with 48 principal investigators and their study staff who had successfully engaged with different diverse communities from research institutions in the United States. Data were analyzed using a rapid qualitative analysis approach and organized thematically. FINDINGS: Six key themes related to conducting community-engaged research emerged: research team as community health advocate, community-academic partnership characteristics, best practices for conducting research with diverse communities, incurred financial costs, sustainability of inclusive research efforts, and system-related challenges. Participants emphasized the role of research teams to uplift community voices, build authentic and collaborative partnerships, prioritize cultural practices of the community, and use data to inform policy. Best practices included providing incentives, offering bilingual materials and having bilingual staff, and using multi-pronged recruitment and retention strategies. Financial costs included both tangible costs such as transportation and honoraria, while intangible costs such as time and trust-building were also highlighted. Sustainability required early planning, capacity-building, and continuous fiscal support. Challenges included insufficient institutional support, burnout, and staff turnover, stressing the need for multi-level strategies and solutions integrated into the research environment to support inclusive research practices. CONCLUSIONS: A general research approach that tailors to specific communities' preferences and fosters collaborative partnerships will better enhance representation in research. However, the research environment requires attention to multi-level strategies to minimize challenges to conducting community-engaged research.