Dataset Information

Practical and Ethical Concerns in Implementing Enhanced Surveillance Methods to Improve Continuity of HIV Care: Qualitative Expert Stakeholder Study.

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.

SUBMITTER: Buchbinder M

PROVIDER: S-EPMC7501574 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

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Practical and Ethical Concerns in Implementing Enhanced Surveillance Methods to Improve Continuity of HIV Care: Qualitative Expert Stakeholder Study.

Buchbinder Mara M Blue Colleen C Rennie Stuart S Juengst Eric E Brinkley-Rubinstein Lauren L Rosen David L DL

JMIR public health and surveillance 20200904 3

<h4>Background</h4>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.<h4>Objective</h4>The purpose of this qualitative study was to identify and ...[more]

PMID: 32886069

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Dataset Information

Practical and Ethical Concerns in Implementing Enhanced Surveillance Methods to Improve Continuity of HIV Care: Qualitative Expert Stakeholder Study.

Publications

Practical and Ethical Concerns in Implementing Enhanced Surveillance Methods to Improve Continuity of HIV Care: Qualitative Expert Stakeholder Study.

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