Using diverse community feedback to inform inclusive community action: Insights from the Louisiana Community Engagement Alliance

ABSTRACT

Purpose of Study Clinical trial participation remains low among US minority groups, who account for <1/10 of trial participants.1,2 Diverse, equitable and inclusive participation is needed to lessen disparities in health status and clinical outcomes.3 Community-based participatory research (CBPR) strategies identify salient community issues, and may be useful for understanding and addressing participation barriers among minority groups.4,5 The Louisiana Community Engagement Alliance Against COVID-19 Disparities (LA-CEAL) - a partnership of universities, community pharmacies, faith-based organizations (FBOs), and federally qualified health centers (FQHCs) - aims to strengthen and leverage community relationships to address barriers to uptake of preventive/therapeutic strategies in underserved populations. This study examines the utility of LA-CEAL's CBPR approach in facilitating inclusive participation in clinical trials. Methods Used Listening forums were held with a diverse group of LA community stakeholders, including healthcare providers, community pharmacists, FBO leaders and other trusted community members, to gather views on the need for and challenges to inclusive trial participation. Ongoing discussions between community representatives and leaders, academics and program staff facilitated outreach and guided development of informational strategies targeting minority groups. Summary of Results: Listening forums (N = 4;20 participants) revealed limited awareness, mistrust and fear stemming from historical and present injustices, and difficulty accessing opportunities as key themes underlying barriers to participation. To address identified barriers, 8 video testimonials featuring participants, investigators, and health advocates (62.5% Black;12.5% Hispanic;50% female) were developed to educate on expectations and experiences, motivations to participate, human subject protections, and the importance of diversity. Two animated videos featuring trusted community leaders and cultural ambassadors (e. g., New Orleans cultural icon, Irma Thomas) were created to explain trial processes, discuss participation benefits, and address the history of racism in medicine. Finally, connections between the Tulane Clinical Translational Unit and rural FQHCs enabled clinical trial study buses to visit and recruit in diverse LA communities. Conclusion(s) Via LA community stakeholder discussions, targeted strategies to address barriers to minority participation in clinical trials were developed and applied. Use of CBPR strategies was critical to developing intentional action reflective of LA community needs. Copyright © 2023 Southern Society for Clinical Investigation.