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

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  • Elizabeth Lockhart
  • DeAnne Turner
  • Jerome T Galea
  • Stephanie L Marhefka

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.

Suggested Citation

  • Elizabeth Lockhart & DeAnne Turner & Jerome T Galea & Stephanie L Marhefka, 2022. "Considerations for partnering with Ryan White Case Managers to create equitable opportunities for people with HIV to participate in research," PLOS ONE, Public Library of Science, vol. 17(10), pages 1-12, October.
  • Handle: RePEc:plo:pone00:0276057
    DOI: 10.1371/journal.pone.0276057
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    References listed on IDEAS

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    1. George, S. & Duran, N. & Norris, K., 2014. "A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders," American Journal of Public Health, American Public Health Association, vol. 104(2), pages 16-31.
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