Health information is often shared between UK National Health Service (NHS/HSC) organisations for patient care. Sometimes de-identified information (with all personal details removed) is used for research. This is the largest study to examine how people want their NHS data to be shared.
Nearly 30,000 people took part in the anonymous survey online from February to September 2020, which was open to all UK residents. Members of the public, carers and people using health services helped to design the study, co-producing some of the most detailed questions ever asked to measure people’s opinions on health data and consent.
Study lead and CPFT honorary consultant psychiatrist Dr Rudolf Cardinal said: “Thank you to everyone who contributed to this survey and gave their views. We wanted to increase understanding of people’s preferences about sharing their health data. We hope this will help shape systems for sharing data safely and securely, in line with people’s wishes, both to deliver care and to improve future care through research.
“Our results show that most people wanted their data to be shared between NHS organisations looking after them, for their own care, without being asked first. When it came to research, respondents were generally happy for de-identified data to be shared to the NHS, universities, and research charities, but not to commercial organisations, which could collaborate with the NHS.
A majority would support a central NHS system to control how their information is used for care and research, and also to help them sign up to take part in research studies. Interestingly, support for data sharing increased during the pandemic.”Rudolf added: “We hope this research contributes to discussions about health data rules. Governance of UK health data must be transparent and reflect the public’s wishes, with appropriate ways for people to make decisions, and improved access to their own data.”
The full results and analysis have been published today in the journal BMJ Open, available online at: https://bmjopen.bmj.com/content/12/4/e057579
Key findings:
76% of respondents supported sharing their data for their own health care without being asked first, but 20% opposed this.
89% supported a central NHS mechanism to choose how their information is shared.
64% wanted a single NHS system to sign up to take part in research studies.
Demographic factors such as age and personal experience of mental health conditions significantly affected willingness to share data.
This research was funded by a UK Medical Research Council (MRC) Mental Health Data Pathfinder award and supported by the National Institute for Health and Care Research (NIHR) Clinical Research Network for the East of England and NIHR Cambridge Biomedical Research Centre.