Practical and Ethical Concerns in Implementing Enhanced Surveillance Methods to Improve Continuity of HIV Care: Qualitative Expert Stakeholder Study

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  • Buchbinder, Mara
    • Affiliation: University of North Carolina at Chapel Hill
  • Blue, Colleen
    • Affiliation: University of North Carolina at Chapel Hill
  • Rennie, Stuart
    • Affiliation: University of North Carolina at Chapel Hill
  • Juengst, Eric
    • Affiliation: University of North Carolina at Chapel Hill
  • Brinkley-Rubinstein, Lauren
    • Affiliation: University of North Carolina at Chapel Hill
  • Rosen, David L
    • Affiliation: University of North Carolina at Chapel Hill
Abstract
  • BACKGROUND: Retention in HIV care is critical to maintaining viral suppression and preventing further transmission, yet less than 50% of people living with HIV in the United States are engaged in care. All US states have a funding mandate to implement Data-to-Care (D2C) programs, which use surveillance data (eg, laboratory, Medicaid billing) to identify out-of-care HIV-positive persons and relink them to treatment. OBJECTIVE: The purpose of this qualitative study was to identify and describe practical and ethical considerations that arise in planning for and implementing D2C. METHODS: Via purposive sampling, we recruited 43 expert stakeholders-including ethicists, privacy experts, researchers, public health personnel, HIV medical providers, legal experts, and community advocates-to participate in audio-recorded semistructured interviews to share their perspectives on D2C. Interview transcripts were analyzed across a priori and inductively derived thematic categories. RESULTS: Stakeholders reported practical and ethical concerns in seven key domains: permission and consent, government assistance versus overreach, privacy and confidentiality, stigma, HIV exceptionalism, criminalization, and data integrity and sharing. CONCLUSIONS: Participants expressed a great deal of support for D2C, yet also stressed the role of public trust and transparency in addressing the practical and ethical concerns they identified.
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  • Article
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  • In Copyright
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  • Attribution 3.0 United States
Journal title
  • JMIR Public Health and Surveillance
Journal volume
  • 6
Journal issue
  • 3
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  • e19891
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  • English
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