%0 Journal Article
%@ 2369-2960
%I JMIR Publications
%V 6
%N 3
%P e19891
%T Practical and Ethical Concerns in Implementing Enhanced Surveillance Methods to Improve Continuity of HIV Care: Qualitative Expert Stakeholder Study
%A Buchbinder,Mara
%A Blue,Colleen
%A Rennie,Stuart
%A Juengst,Eric
%A Brinkley-Rubinstein,Lauren
%A Rosen,David L
%+ Department of Social Medicine, Center for Bioethics, University of North Carolina at Chapel Hill, 333 S Columbia Street, MacNider 341A CB 7240, Chapel Hill, NC, 27599, United States, 1 9198436881, mara_buchbinder@med.unc.edu
%K HIV surveillance
%K retention in HIV care
%K qualitative research
%K public health ethics
%D 2020
%7 4.9.2020
%9 Original Paper
%J JMIR Public Health Surveill
%G English
%X 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. 
%M 32886069
%R 10.2196/19891
%U http://publichealth.jmir.org/2020/3/e19891/
%U https://doi.org/10.2196/19891
%U http://www.ncbi.nlm.nih.gov/pubmed/32886069