Considerations for Partnering with Ryan White Case Managers to Create Equitable Opportunities for People with HIV to Participate in Research

Authors

Elizabeth Lockhart, Center for Health Policy and Health Services Research, Henry Ford Health System, Detroit, Michigan, United States of America
DeAnne Turner, University of South FloridaFollow
Jerome T. Galea, University of South FloridaFollow
Stephanie L. Marhefka, University of South FloridaFollow

Document Type

Article

Publication Date

2022

Digital Object Identifier (DOI)

https://doi.org/10.1371/journal.pone.0276057

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.

Rights Information

This work is licensed under a Creative Commons Attribution 4.0 License.

Was this content written or created while at USF?

Yes

Citation / Publisher Attribution

PLoS ONE, v. 17, issue 10, art. e0276057

Scholar Commons Citation

Lockhart, Elizabeth; Turner, DeAnne; Galea, Jerome T.; and Marhefka, Stephanie L., "Considerations for Partnering with Ryan White Case Managers to Create Equitable Opportunities for People with HIV to Participate in Research" (2022). Social Work Faculty Publications. 221.
https://digitalcommons.usf.edu/sok_facpub/221