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

Abstract

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.

Examining Recruitment Strategies in the Enrollment Cascade of Youth Living With HIV: Descriptive Findings From a Nationwide Web-Based Adherence Protocol

“…Klassen et al [ 40 ] suggested that regular contact with health care facilities and face-to-face interactions with trusted sources such as health care providers may be critical in successfully recruiting participants who are HIV positive. Another study found success in partnering with Ryan White Case Managers to collect data from people with HIV, especially those who are hard to reach, disenfranchised, or underrepresented [ 41 ]. Leveraging the relationship between health care providers and youth living with HIV may yield a more specific, targeted, and efficient avenue to recruit a diverse pool of eligible participants, especially using the HRSA Ryan White HIV/AIDS Program’s comprehensive system of care and treatment [ 29 ].…”