Building Partnerships and Stakeholder Relationships for HIV Prevention: Longitudinal Cohort Study Focuses on Community Engagement.

Abstract

African American women bear disproportionate human immunodeficiency virus (HIV) burden in the United States, yet are often underrepresented in clinical research. Community engagement may decrease research mistrust and increase participation. We describe strategies used to engage community partners and female participants in a multisite HIV incidence study, HIV Prevention Trials Network (HPTN) 064. HPTN 064 assessed HIV incidence among women in 10 geographic areas chosen for both high prevalence of HIV and poverty. Women were recruited using venue-based sampling and followed for six to 12 months. Recruitment and engagement approaches aligned with the National Institutes of Health (NIH) Director's Council of Public Representatives (COPR) Community Engagement Framework's. Results showed engagement activities increased rapport and established new partnerships with community stakeholders. Study sites engaged 56 community organizations with 2,099 women enrolled in 14 months. Final retention was 94%. The COPR model maximized inclusiveness and participation of African American women impacted by HIV, supported recruitment and retention, and was the cornerstone of community engagement.