Advancing Engagement and Enrollment of Older Black Americans in Alzheimer’s disease and Dementia‐Related Research

Abstract

AbstractBackgroundThe under‐enrollment of racial and ethnic minorities in clinical trials limits the development of culturally tailored disease treatments and preventative strategies. For example, African Americans experience a greater risk of Alzheimer’s disease (AD), yet they remain woefully underrepresented in AD research. This limits understanding of how AD may operate differently in black populations, who have a higher burden of socio‐structural determinants of health. To improve older black American enrollment, The NYU Healthy Brain Aging and Sleep Center (HBASC) team developed a method tailored toward increasing minority enrollment in clinical trials by collaborating with community‐based organizations and minority populations to reexamine barriers to trial participation.MethodHBASC conducted a single‐site (New York Metropolitan Area) longitudinal study examining sleep and AD in healthy black adults (aged 60‐75). From the study, barriers to trial enrollment were evaluated on a systemic and individual level. The degree to which each level directly or indirectly contributed to barriers to enrollment was further explored using a series of steps and practices seeking to engage underrepresented communities in research. In doing so, team members established and implemented a community‐focused method called FEED. Study personnel demonstrated the feed method by Finding groups, organizations, and trusted community members to collaborate with, Educating community members, Engaging community members through events and educational seminars, and Delivering resources to the community.ResultThrough collaborations with community leaders and organizations, the study team performed community outreach events, raising disease awareness, sustaining trustful relationships, and providing educational resources. The study team saw ∼50% increase in black participant enrollment through the FEED method. Increased engagement in medical research was accomplished when underrepresented communities were empowered with the tools and resources to make knowledgeable decisions.ConclusionDiverse populations of patients face complex and multifaceted barriers to enrollment in clinical trials. A FEED framework will help address these barriers at an individual and systemic level.