Background: African American women bear a disproportionate burden of HIV in the United States, yet are under-represented in clinical research. Community engagement may decrease African American women’s mistrust and increase participation in clinical research. We describe strategies used to engage community partners and to successfully recruit and retain women for a large, multisite HIV incidence study.
Methods: HIV Prevention Trials Network 064 assessed HIV incidence among women living in 10 communities with high prevalence of HIV and poverty. Eligible women self-reported unprotected sex with a man in the previous six months and at least one additional personal or male sex partner(s) characteristic associated with increased risk of HIV acquisition (e.g., substance use). Women were recruited from community locations using venue-based sampling and followed in the study for 6 to 12 months. Our recruitment and engagement approach aligned with the NIH Director’s Council of Public Representatives (COPR) community engagement framework’s five core principles: meaningful community involvement, mutual respect, authentic community-academic partnerships, community stakeholder capacity building, and effective results dissemination.
Results: 2,099 women (88% African American) were enrolled in only 14 months; final retention was 94%. Community engagement activities spanned all phases of the research process and were designed to build community rapport and establish mutual respect between researchers and community stakeholders. All sites had community advisory boards; developed strong relationships with community representatives who received training on reading a protocol and clinical research; were active throughout the study (e.g., selected study logo); and shared study results in community forums and webinars.
Conclusions: Applying the core principles of the COPR model ensured inclusiveness and participation of African American women impacted by HIV from study inception to results dissemination, supported recruitment and retention efforts, and served as the cornerstone of community engagement activities.