Clinical trial participation among underserved communities: Insights from the Louisiana Community Engagement Alliance.

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  • Additional Information
    • Source:
      Publisher: Elsevier Country of Publication: United States NLM ID: 0370506 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1538-2990 (Electronic) Linking ISSN: 00029629 NLM ISO Abbreviation: Am J Med Sci Subsets: MEDLINE
    • Publication Information:
      Publication: 2016- : New York : Elsevier
      Original Publication: Philadelphia : J. B. Lippincott
    • Subject Terms:
      COVID-19*/epidemiology; Humans ; Middle Aged ; Qualitative Research ; Cross-Sectional Studies ; Focus Groups ; Louisiana
    • Abstract:
      Background: Diverse, equitable and inclusive participation in clinical research is needed to ensure evidence-based clinical practice and lessen disparities in health outcomes. Yet, clinical trial participation remains critically low in minoritized communities, particularly among Blacks. The Louisiana Community Engagement Alliance against COVID-19 Disparities (LA-CEAL) was launched in response to the disproportionate impact of COVID-19 on Black Louisianans to understand community barriers and preferences and increase inclusive participation in research. This study aims to understand perceptions regarding COVID-19 trial participation among underrepresented Louisianans.
      Methods: A rapid assessment integrating cross-sectional, surveys among federally qualified health center (FQHC) patients and community residents, and focus group discussions (FGDs) from community representatives was conducted in 2020-2021. Factors and perceptions underlying trial participation were identified using logistic regression models and thematic analyses, respectively.
      Results: Quantitative findings (FQHC: N=908, mean age=46.6 years, 66.4% Black; community: N=504, mean age=54.2 years, 93.7% Black) indicated that 0.9% and 3.6%, respectively, ever participated in a COVID-19 trial. Doctors/Healthcare providers were most trusted (FQHC=55.1%; community=59.3%) sources of information about trials. Advancing age was associated with increased odds of being very willing to participate (OR FQHC =1.03, 95% CI 1.02-1.05; OR Community =1.02, 95% CI 1.00-1.04). Qualitative data (6 FGDs, 29 attendees) revealed limited awareness, experimentation/exploitation-based fears, and minimal racial/ethnic representation among trialists as barriers to participation.
      Conclusion: COVID-19 trial participation rates were low in our sample. Altruism was a key facilitator to participation; fear, mistrust, and low awareness were predominant barriers. Community-centered approaches, engaging informed providers and trusted community members, may facilitate inclusive trial participation.
      Competing Interests: Declaration of Competing Interest The authors have no conflicts of interest to disclose.
      (Copyright © 2023. Published by Elsevier Inc.)
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    • Grant Information:
      K12 AR084224 United States AR NIAMS NIH HHS; R01 HL133790 United States HL NHLBI NIH HHS; R33 AG068481 United States AG NIA NIH HHS; OT2 HL158287 United States HL NHLBI NIH HHS; K12 HD043451 United States HD NICHD NIH HHS
    • Contributed Indexing:
      Keywords: COVID-19; Clinical trial participation; Community; Diversity, Equity; FQHCs; Inclusion; Mixed methods
    • Publication Date:
      Date Created: 20230730 Date Completed: 20230904 Latest Revision: 20241003
    • Publication Date:
      20241003
    • Accession Number:
      PMC10962264
    • Accession Number:
      10.1016/j.amjms.2023.07.011
    • Accession Number:
      37517691