Impact of dedicated women's outreach workers (WOWs) on recruitment of women in ACTG clinical studies

• Authors: Carlos del Rio, Emory University; Elizabeth Barr, AIDS Clinical Trials Group (ACTG) Community Scientific Subcommittee (CSS); Karine Dubé, UNC Gillings School of Global Public Health; Shobha Swaminathan, Rutgers New Jersey Medical School; Carlos Del Rio, Emory University; Danielle M Campbell, Charles R. Drew University of Medicine and Science; Marta Paez-Quinde, Rutgers New Jersey Medical School; Susan E Cohn, Northwestern University
• Journal Title: HIV RESEARCH & CLINICAL PRACTICE
• Volume: Volume 22, Number 2
• Publisher: TAYLOR & FRANCIS LTD | 2021-06-05, Pages 37-45
• Type of Work: Article | Post-print: After Peer Review
• Publisher DOI: http://doi.org/10.1080/25787489.2021.1938825
• Subjects: Health Sciences, Medicine and Surgery; Health Sciences, Public Health
• Keywords: Science & Technology; Life Sciences & Biomedicine; Infectious Diseases; Pharmacology & Pharmacy; HIV treatment trials; women; outreach workers; recruitment; clinical trials; HIV; AIDS; community engagement; gender; AFRICAN-AMERICAN WOMEN; UNITED-STATES; RETENTION CHALLENGES; TRANSGENDER WOMEN; HIV TREATMENT; BLACK-WOMEN; TRIALS; STRATEGIES; PROGRAM; PEOPLE

Abstract

Background: Despite efforts by the AIDS Clinical Trials Group (ACTG) to enroll representative numbers of diverse women, participation in ACTG studies in the United States remains largely white and male. To address this gap in women’s participation in ACTG research, a one-year pilot study of dedicated women’s outreach workers (WOWs) was proposed. Objectives: included demonstrating that targeted recruitment efforts can expand community awareness of ACTG research and ensuring successful enrollment of women at the respective clinical research sites. Methods: The pilot study was conducted at two U.S. sites (Rutgers New Jersey Medical School and Emory Ponce de Leon Center in Atlanta, Georgia). The WOWs worked with site personnel to identify and reach out to women living with HIV and/or Hepatitis B or C at their respective sites and encourage them to join a clinical trial registry for those interested in participating in future clinical trials. Results: The Rutgers WOW approached 127 potential participants (of whom 100 joined the WOW registry) and screened 35 participants for open ACTG studies. The Emory WOW approached 120 participants, enrolling 86 into the WOW registry, and screened 51 potential participants for open ACTG studies during the WOW’s tenure. The majority of women screened at both sites were women of color. Conclusions: The WOW study team identified several lessons learned that can inform future efforts to engage women living with HIV in clinical research. First, success in engaging women is proportional to level of funding and institutional support. Second, there is a need for a more gender-inclusive scientific agenda as women are more likely to participate if studies address topics of interest to them. Third, meaningful engagement is a two-way street.