Engaging Black Women in Stress Urinary Incontinence Research Prioritization Through Intentional Recruitment and Alliance With Community Partners.

Abstract

Introduction: Despite the disproportionate impact of stress urinary incontinence (SUI) on Black women and their underrepresentation in research, strategies for effectively engaging Black women remain underexplored. Here, we share insights gained from a Patient-Centered Outcomes Research Institute-funded patient engagement project on SUI in which increasing racial diversity of participants was prioritized and achieved.

Methods: A multiphase patient and stakeholder engagement project, conducted from June 2021 to November 2023, sought to train SUI patient partners and identify patient-generated priorities for research. Collaborating with community partners, purposeful recruitment strategies targeting Black women were employed. Key activities included surveying patient experiences, educational video training, and research prioritization surveys, all facilitated virtually.

Results: Initial crowdsourcing revealed low representation of Black women (6%). Collaboration with Black Health Matters increased representation in subsequent phases (ranging from 18% to 40%). Of the trained patient partners, 24% identified as Black. Ultimately, 16% of respondents to the research prioritization survey were Black. Collaborative efforts, including the dissemination of newsletter articles through Black Health Matters channels, significantly contributed to increased participation among Black women.

Conclusions: Intentional and collaborative outreach efforts, emphasizing education, trust-building, and transparency, successfully increased representation of Black women in SUI-related patient engagement activities. The involvement of community organizations, clinicians, and patients was crucial in ensuring diverse representation and amplifying underrepresented voices in research prioritization efforts. This collaborative approach can serve as a model for enhancing racial diversity in patient engagement initiatives across health care research domains.