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Practical and Ethical Concerns in Implementing Enhanced Surveillance Methods to Improve Continuity of HIV Care:
Mara Buchbinder1, Colleen Blue2, Stuart Rennie1
1Department of Social Medicine, Center for Bioethics, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States.
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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