COMMUNITY ADVISORY BOARDS AS PARTNERS IN RESEARCH: FINDINGS FROM FOCUS GROUP DISCUSSIONS ON COMMUNITY DRIVEN APPROACHES TO RESEARCH ENGAGEMENT

Abstract

BACKGROUND – Community-engaged (CE) research is essential for conducting ethical, culturally responsive research with underrepresented populations. CE research models address power imbalances through community advisory boards (CABs)—groups of community members who partner with researchers as equal stakeholders to guide study design and implementation. The purpose of this study is to train CAB members to conduct focus groups investigating community preferences for educational materials, barriers and facilitators to research participation, perspectives on effective research partnerships, and recommendations for enhancing equity in research initiatives.METHODS – This qualitative study employed a community-based participatory research (CBPR) approach featuring CAB and focus group methodologies. Community members representing diverse demographics were recruited across the Winston-Salem, North Carolina area to participate in focus groups until analytic sufficiency is reached. CAB members received comprehensive training in focus group facilitation, research ethics, and cultural responsiveness before conducting sessions at community-based locations. Focus groups will explore participants’ research experiences, preferred educational formats, barriers to engagement, and recommendations for strengthening community-academic partnerships. All sessions will be audio-recorded with verbal consent and transcribed verbatim. Data analysis will follow Braun and Clarke’s six-phase thematic framework. Transcripts will be independently coded with analytic sufficiency assessed through quantitative density of the coding record, consolidation patterns during thematic development, and member checking by the CAB. RESULTS – Ten focus groups were completed across multiple community sites, engaging 107 participants from diverse backgrounds. The coding process resulted in 105 original codes. Following refinement of the codes, the data yielded 10 interrelated themes: 1) Trust is a foundational and fragile construct, 2) Historical trauma and structural inequity serve as barriers to engagement, 3) transparency and information sharing are essential prerequisites for research participation, 4) Altruism and community benefit are motivations for research participation, 5) Multilevel barriers interact to hinder research participation, 6) Community-centered and culturally responsive engagement re necessary components for research, 7) Dignity, respect, and feeling valued support willingness to participate in research, 8) Transparency and reciprocity are fundamental: The research loop must begin and end with communities, 9) Epistemic crisis: Participants are strained by navigating contested information and institutional uncertainty, 10) Fear, risk perception, and anticipated post-participation abandonment are keys to research hesitation. CONCLUSIONS – This study contributes to the growing knowledge base on effective CE strategies through CABs. The findings will inform development of practical tools for other communities and research institutions seeking to strengthen their CE practices and promote more equitable research partnerships with the community.