Abstract MPTU13: Inclusion of Incarcerated Individuals and Their Families in Cardiovascular Health Research: Insights from Community-Based Focus Groups

Abstract

Background: Incarceration is a structural determinant of cardiovascular disease (CVD) risk with profound health consequences for both directly impacted individuals and their families. Yet, these populations are largely excluded from CVD research, raising ethical, methodological, and trust-related issues for research participation. This study aimed to identify community-informed strategies for ethically engaging incarcerated and formerly incarcerated individuals and their families in CVD research, with a focus on consent, data governance, and biological sample collection. Methods: Three community-based focus groups were conducted between December 2024 and May 2025 in New Haven, CT (N=12); Durham, NC (N=14); and San Antonio, TX (N=11). Participants (N=37) were currently, or formerly incarcerated individuals and family members or romantic partners recruited through community partners. Eligibility criteria included experience with incarceration and interest in health research participation. Sessions were audio-recorded, transcribed, and analyzed using a rapid qualitative approach involving collaborative interpretation by academic researchers, our community partner (Justice Leadership USA) and formerly incarcerated partners. Key domains examined included motivators for participation, recruitment approaches, informed consent, data sharing expectations, and biological data collection preferences. Results: Across sites, participants emphasized the importance of embedding lived experience throughout the research process to improve trust, relevance, and accuracy. Recommended strategies included peer-led recruitment rather than reliance on correctional staff, offering choice in incentives (e.g., monetary vs. educational benefits), and presenting consent information in clear, multimodal formats tailored to literacy levels and trauma-informed practices. Concerns about biological data centered on privacy, potential misuse, and preference for in-person collection, while participants supported de-identified data sharing under transparent governance structures with explicit protections through community oversight. Conclusions: Community-driven engagement approaches are essential to designing ethical, trustworthy, and effective CVD research in carceral contexts. Incorporating participant input into recruitment, consent, data governance, and sample collection practices can enhance participation, data integrity, and translational impact for justice-impacted populations.