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A new study has found that many people living with HIV are willing to share their HIV status for health research—as long as their privacy is protected, and the process is transparent.

Researchers from Brighton and Sussex Medical School (BSMS) and University Hospitals Sussex NHS Foundation Trust spoke with people living with HIV in England to understand their views on sharing their HIV status in routinely collected health datasets used for research. The study funded by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration Kent, Surrey and Sussex (ARC KSS), found that while participants were open to data being used to improve healthcare, they had strong concerns about confidentiality, stigma, and the risk of being identified.

Currently, the NHS removes any mention of HIV from anonymised health data used in research. Doing this limit important studies on how HIV affects ageing and other health issues. Participants in the study said they want their experiences included in research, especially to improve care for people ageing with HIV.

Leading the research, Dr Liz Ford, Associate Professor at BSMS and ARC KSS Data Science Theme Lead, says: "People living with HIV want to be part of research that improves healthcare, but they need to know their privacy is protected. By involving the community and being open about how data is used, we can build trust and carry out research that truly meets their needs."

Based on the findings, the researchers made several key recommendations:

  • Include HIV data in anonymised health datasets used for research, to help improve understanding of health and ageing in people living with HIV.
  • Ensure strong privacy protections are in place to prevent misuse or re-identification of individuals.
  • Be transparent about how health data is used and who has access to it.
  • Involve people living with HIV in decisions about data sharing policies to build trust and make sure research reflects their needs.
  • Address stigma by educating the public and healthcare professionals about HIV, helping reduce fear around data use.

The study shows that with the right safeguards and meaningful involvement of the HIV community, people are open to contributing their data to help improve care, reduce health inequalities, and support vital research.

Read full article here.

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