"I don't see a reason why we should be hidden from view": Views of a convenience sample of people living with HIV on sharing HIV status data in routinely collected health and care databases in England
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View abstract on PubMed
Summary
This summary is machine-generated.People with HIV (PLWH) support sharing health data for research, but demand strong privacy safeguards and involvement in projects. Rebuilding trust through transparency and accountability is crucial for future HIV and ageing research.
Area Of Science
- Public Health
- Health Informatics
- Sociology of Health
Background
- People living with HIV (PLWH) have near-normal life expectancy but face stigma, with HIV status treated as sensitive health information.
- Current UK National Health Service (NHS) research datasets strip HIV diagnostic codes, hindering research on HIV and ageing.
- There is a need to research how HIV affects ageing conditions in a growing PLWH population.
Purpose Of The Study
- To elicit views from PLWH regarding the sharing of their HIV status in NHS datasets.
- To identify appropriate safeguards for sharing sensitive health information for research purposes.
Main Methods
- Three focus groups were conducted with PLWH recruited through HIV charities.
- Discussions covered data governance, sharing, privacy, law, and research on HIV and ageing.
- Focus group discussions were audio-recorded, transcribed, and thematically analysed.
Main Results
- 37 PLWH participated, with trust (both loss and rebuilding) being a central theme.
- Participants supported data use for research and healthcare improvements, contingent on privacy guarantees.
- Concerns included loss of trust, data user agendas, discrimination, and stigma; safeguards requested were transparent security, accountability, communication, and PLWH involvement.
Conclusions
- PLWH cautiously favor sharing their data for HIV research.
- High security levels and direct involvement of PLWH in setting research agendas are essential.
- These measures are necessary to avoid increased stigma and ensure responsible data utilization.
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