@Article{info:doi/10.2196/19891,
author="Buchbinder, Mara
and Blue, Colleen
and Rennie, Stuart
and Juengst, Eric
and Brinkley-Rubinstein, Lauren
and Rosen, David L",
title="Practical and Ethical Concerns in Implementing Enhanced Surveillance Methods to Improve Continuity of HIV Care: Qualitative Expert Stakeholder Study",
journal="JMIR Public Health Surveill",
year="2020",
month="Sep",
day="4",
volume="6",
number="3",
pages="e19891",
keywords="HIV surveillance; retention in HIV care; qualitative research; public health ethics",
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. ",
issn="2369-2960",
doi="10.2196/19891",
url="http://publichealth.jmir.org/2020/3/e19891/",
url="https://doi.org/10.2196/19891",
url="http://www.ncbi.nlm.nih.gov/pubmed/32886069"
}