HIV Data Sharing Focus Groups - discussion groups with people living with dementia about whether they would feel comfortable with their HIV status data being shared from their NHS patient data for research.

Background: HIV is a highly stigmatised condition, and HIV status is not shared in databases of patient health records. As people living with HIV (PLWH) live longer, we must research how HIV affects long term health and well-being. We asked PLWH what research benefits they envisaged if HIV status was shared in databases, what privacy risks they feared, and what safeguards they would want for the data.Methods: We conducted 3 online deliberative focus groups each with around 12 participants. We presented information on data governance, data sharing, patient privacy, law, and research possibilities with data-sharing. We recorded facilitated breakout room discussions.Results: 37 PLWH took part, and were optimistic about the research and health care improvements which could be gained in understanding mental health, wellbeing and experience of stigma if HIV status data was shared for research. Concerns centred around data breaches, lack of trust in systems and organisations using the data, suspicion of data users’ agenda, and worry about increased discrimination. Proposed safeguards included data security and encryption, limited access, transparent accountability, awareness training, clear communication and patient involvement.Conclusions: PLWH were cautiously in favour of their data being shared for research into mental health in HIV, where this could be undertaken with high levels of security, and the close involvement of people with lived experience of HIV.Summary of filesHIVDataSharing_FG1main room_TRANSCRIPT.docx: Transcript of focus group 1 main room summary session conducted 16/6/22 by Michael Smith.HIVDataSharing_FG2main room_TRANSCRIPT.docx: Transcript of focus group 2 main room summary session conducted 23/6/22 by Michael Smith.HIVDataSharing_FG3main room_TRANSCRIPT.docx: Transcript of focus group 3 main room summary session conducted 12/7/22 by Michael Smith.<br>HIVDataSharing_FG3_NOTES.docx: Notes from focus group 3 conducted 12/7/22, notes made by Jaime Vera.<br>