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

Leslie S Craig; Daniel F Sarpong; Erin M Peacock; Katherine P Theall; LaKeisha Williams; Sara Al-Dahir; Terry C Davis; Connie L Arnold; Allie Williams; Tynesia Fields; Michelle Wilson; Marie Krousel-Wood

doi:10.1016/j.amjms.2023.07.011

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

Am J Med Sci. 2023 Oct;366(4):254-262. doi: 10.1016/j.amjms.2023.07.011. Epub 2023 Jul 28.

Authors

Affiliations

¹ Tulane University, School of Medicine, New Orleans, LA, USA.
² Xavier University of Louisiana, College of Pharmacy, New Orleans, LA, USA; Yale School of Medicine, General Internal Medicine, Office of Health Equity Research.
³ Tulane University, School of Public Health and Tropical Medicine, New Orleans, LA, USA.
⁴ Xavier University of Louisiana, College of Pharmacy, New Orleans, LA, USA.
⁵ Louisiana State University Health Shreveport, Shreveport, LA, USA.
⁶ Tulane University, School of Medicine, New Orleans, LA, USA; Tulane University, School of Public Health and Tropical Medicine, New Orleans, LA, USA. Electronic address: [email protected].

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.

Keywords: COVID-19; Clinical trial participation; Community; Diversity, Equity; FQHCs; Inclusion; Mixed methods.

Publication types

Research Support, N.I.H., Extramural

MeSH terms

COVID-19* / epidemiology
Cross-Sectional Studies
Focus Groups
Humans
Louisiana
Middle Aged
Qualitative Research

Abstract

Publication types

MeSH terms

Grants and funding