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.
Keywords: HIV surveillance; public health ethics; qualitative research; retention in HIV care.
©Mara Buchbinder, Colleen Blue, Stuart Rennie, Eric Juengst, Lauren Brinkley-Rubinstein, David L. Rosen. Originally published in JMIR Public Health and Surveillance (http://publichealth.jmir.org), 04.09.2020.