Practical and Ethical Concerns in Implementing Enhanced Surveillance Methods to Improve Continuity of HIV Care: Qualitative Expert Stakeholder Study.
HIV surveillance
public health ethics
qualitative research
retention in HIV care
Journal
JMIR public health and surveillance
ISSN: 2369-2960
Titre abrégé: JMIR Public Health Surveill
Pays: Canada
ID NLM: 101669345
Informations de publication
Date de publication:
04 09 2020
04 09 2020
Historique:
received:
05
05
2020
accepted:
14
07
2020
revised:
24
06
2020
entrez:
5
9
2020
pubmed:
5
9
2020
medline:
28
7
2021
Statut:
epublish
Résumé
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. The purpose of this qualitative study was to identify and describe practical and ethical considerations that arise in planning for and implementing D2C. 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. 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. 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.
Sections du résumé
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.
Identifiants
pubmed: 32886069
pii: v6i3e19891
doi: 10.2196/19891
pmc: PMC7501574
doi:
Types de publication
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
e19891Subventions
Organisme : NIAID NIH HHS
ID : R01 AI129731
Pays : United States
Organisme : NIAID NIH HHS
ID : P30 AI050410
Pays : United States
Informations de copyright
©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.
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