Use of Popular Opinion Leader Models to Disseminate Information About Clinical Trials to Black Individuals With Lupus in Two US Cities

Laura C. Arneson, Kreager A. Taber, Jessica N. Williams, Sciaska N. Ulysse, Daniel L. Erickson, Joan S. Chmiel, Holly Milaeger, Elmer Freeman, Patricia Canessa, Jing Song, Anh H. Chung, Candace H. Feldman, Rosalind Ramsey-Goldman*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Objective: Clinical trials for systemic lupus erythematosus (“lupus”) under enroll Black individuals despite higher disease prevalence, morbidity, and mortality among Black compared to White individuals. To begin to address this disparity, we leveraged community–academic partnerships in 2 US cities (Boston and Chicago) to train popular opinion leaders (POLs) to disseminate information about clinical trials in predominantly Black communities. Methods: The team of community and academic partners collaboratively developed a 5-module curriculum about clinical trials, barriers, facilitators, and structural racism in research. We enrolled POLs in Boston and Chicago to participate virtually in the curriculum and assessed knowledge gained by comparing pre- and post-test scores. We described the POLs' ability to disseminate information about clinical trials through their communities. Results: We enrolled 19 POLs in Boston and 16 in Chicago; overall, 71% reported a lupus diagnosis, 94% were female, and 80% self-identified as Black or African American. The program was adapted to virtual formats due to the COVID-19 pandemic. POLs demonstrated significant improvement comparing pre/post scores for the conduct of clinical trials and history of racism in clinical research. Fifteen POLs (43%) reported their dissemination of information about clinical trials. Information reached 425 community members in Boston (90% virtually) and 1,887 in Chicago (95% virtually). Conclusion: By leveraging community–academic partnerships, we developed and implemented a curriculum to promote familiarity with clinical trials, leading to information dissemination by POLs in predominantly Black communities that are underrepresented in lupus clinical trials. The program successfully transitioned to a virtual model during the COVID-19 pandemic.

Original languageEnglish (US)
JournalArthritis Care and Research
DOIs
StateAccepted/In press - 2022

ASJC Scopus subject areas

  • Rheumatology

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