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

• Type of Material: Article
• Authors: Laura C Arneson, Northwestern University; Kreager A Taber, Duke University; Jessica Williams, Emory University; Sciaska N Ulysse, Brigham and Women's Hospital and Harvard Medical Schoo; Daniel L Erickson, Northwestern University; Joan S Chmiel, Northwestern University; Holly Milaeger, Northwestern University; Elmer Freeman, Ctr Community Hlth Educ Res & Serv; Patricia Canessa, Illinois Publ Hlth Assoc; Jing Song, Northwestern University; Anh H Chung, Northwestern University; Candace H Feldman, Brigham and Women's Hospital and Harvard Medical School; Rosalind Ramsey-Goldman, Northwestern University
• Language: English
• Date: 2022-08-23
• Publisher: WILEY
• Publication Version: Final Published Version
• Copyright Statement: © 2022 The Authors. Arthritis Care & Research published by Wiley Periodicals LLC on behalf of American College of Rheumatology.
• License: Creative Commons Attribution-NonCommercial 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1002/acr.24889
• Title of Journal or Parent Work: ARTHRITIS CARE & RESEARCH
• Volume: 75
• Issue: 1
• Start Page: 44
• End Page: 52
• Grant/Funding Information: Dr. Arneson and Ms. Taber contributed equally to this work. Drs. Feldman and Ramsey‐Goldman contributed equally to this work.; Supported by the Department of Health and Human Services Office of Minority Health (grant 5CPIMP181168‐02‐00).
• Keywords: CHALLENGES; Life Sciences & Biomedicine; Rheumatology; ERYTHEMATOSUS; HEALTH; COMMUNITY; SOCIAL DETERMINANTS; Science & Technology; DISPARITIES; NEPHRITIS
• Research Categories: Health Sciences, Medicine and Surgery

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.