Engaging people with lived experience on community advisory boards in community-based participatory research: a scoping review.

OBJECTIVES

Community-based participatory research (CBPR) is a collaborative research process which engages researchers and community members as equals during all phases of a research project. This approach promotes social change and enhances the practical relevance of the research. One key tool in CBPR is the community advisory board (CAB), where individuals with lived experience and community organizations are integrated into the research process and align research with community priorities. This scoping review: (1) explores best practices for effective recruitment and engagement of people with lived experience (PWLE) on CABs; and (2) identifies the scope of literature on minimizing power dynamics between organizations and community members with lived experience who work on CABs together.

DESIGN

A scoping review was conducted utilizing Embase, Medline and PsychINFO. Peer reviewed publications and grey literature published between Jan. 1, 1990, and Mar. 30, 2023, were considered. Two independent reviewers screened references in successive stages of title/abstract and full-text screening. Conflicts were resolved by consensus or a third reviewer. Selected studies were analyzed using a content analysis strategy with NVIVO software.

RESULTS

2346 peer-reviewed studies and 15 articles of grey literature were identified with initial search and 53 texts were included in final analysis. Three main themes were identified; recruitment of PWLE; engagement of PWLE; and navigating power dynamics of PWLE working alongside representatives of community organizations. Within recruitment, subthemes of CAB selection strategies, challenges, and successes were reported. Within engagement, subthemes of CAB management, CAB roles and activities, capacity strategies, challenges, successes, and compensation of members were reported. Lastly, within PWLE working alongside organizational representatives, subthemes of challenges and mitigation strategies were reported. We emphasize the importance of relationship building and mutual respect within the CAB; clearly defined roles and responsibilities to reduce role confusion and tokenism; appropriate compensation, whether monetary or otherwise, bi-directional capacity building; and the use of a cultural insider whilst establishing/operating a CAB.

CONCLUSIONS

We identified key factors that contribute to the effective recruitment and engagement of PWLE on CABs in the context of CBPR. This scoping review, completed by a CBPR group, identified key factors that can be utilized by other CBPR groups to better engage PWLE on CABs. Further research is needed to demonstrate the proposed best practices’ influence on CAB effectiveness.

SUPPLEMENTARY INFORMATION

The online version contains supplementary material available at 10.1186/s12939-025-02573-5.