Considerations for partnering with Ryan White Case Managers to create equitable opportunities for people with HIV to participate in research

• Published in: PloS one Vol. 17; no. 10; p. e0276057
• Main Authors: Lockhart, Elizabeth, Turner, DeAnne, Galea, Jerome T., Marhefka, Stephanie L.
• Format: Journal Article
• Language: English
• Published: San Francisco Public Library of Science 19.10.2022; Public Library of Science (PLoS)
• Subjects: Acquired immune deficiency syndrome; AIDS; AIDS (Disease); AIDS research; Best practice; Biology and Life Sciences; Case management; Clients; Computer and Information Sciences; Data collection; Distributive justice; Earth Sciences; HIV; HIV patients; Human immunodeficiency virus; Human subjects; Internet access; Managers; Medical ethics; Medicine and Health Sciences; Participation; People and Places; Polls & surveys; Research and Analysis Methods; Research ethics; Rural areas; Science Policy; Social Sciences; Supervisors; Surveys; United States; Florida; United States > US
• ISSN: 1932-6203; 1932-6203
• DOI: 10.1371/journal.pone.0276057

Many research studies focus on recruitment from one or few HIV clinics or internet-engaged populations, but this may result in inequitable representation of people with HIV (PWH), across the rural/urban/suburban continuum. Ryan White Case Managers (RWCM) meet regularly with PWH, potentially positioning them as partners in gathering research-related data from diverse groups of low-income, marginalized, PWH. Yet, data collection in partnership with RWCM, particularly over large geographic areas, has been under-explored. We partnered with RWCM and their organizations throughout Florida to administer a 10-item technology use and willingness survey to clients living with HIV; RWCMs provided process-oriented feedback. Among 382 approached RWCM, 71% completed human subjects and survey administration training; 48% gathered data on 10 predetermined survey administration days; and 68% administered at least one survey during the entire period for survey administration. Altogether, 1,268 client surveys were completed, 2.7% by rural participants. Stigma, privacy concerns, and disinterest reportedly inhibited client participation; competing obligations, policies, and narrow recruitment windows prevented some RWCM from offering the survey to clients. Research should further explore strategies and best practices to ensure equitable access to participate in research among PWH.