Accepted for/Published in: JMIR Public Health and Surveillance
Date Submitted: May 5, 2020
Date Accepted: Jul 14, 2020
Practical and ethical concerns in implementing enhanced surveillance methods to improve continuity of HIV care: a qualitative expert stakeholder study
ABSTRACT
Background:
Retention in HIV care is critical to maintaining viral suppression and preventing further transmission, yet less than 40% of people living with HIV in the United States are engaged in care and virally suppressed. All states in the US have a funding mandate to implement Data-to-Care (D2C) programs, which use surveillance data (e.g. laboratory, Medicaid billing) to identify out-of-care HIV-positive persons and re-link 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:
Forty-three expert stakeholders—including ethicists, privacy experts, researchers, public health personnel, HIV medical providers, legal experts, and community advocates—recruited via purposive sampling participated in audio-recorded semi-structured 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 assistances vs. overreach, privacy and confidentiality, stigma, HIV exceptionalism, criminalization, and data integrity and sharing. No patterns emerged in participant views based on stakeholder category.
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.
Citation
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Copyright
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