Results from a national survey of public opinion on sharing health data to support clinical care and research shows support for controlled NHS data sharing.
Through an anonymised online survey that ran from February to September 2020, researchers wanted to understand public opinion on data sharing, including of mental health versus physical health data – and to measure data sharing preferences.
The research was undertaken by Cambridgeshire and Peterborough NHS Foundation Trust (CPFT) and the University of Cambridge, and was produced with support from members of the public, carers and health service users to ensure detailed questions to measure people’s opinions.
Nearly 30,000 people took part in the survey, with participant recruitment supported by 216 general practices and 154 large healthcare organisations, however the researchers note a limitation that the sample remained under-representative of some demographic groups.
It found that 76 percent of respondents supported data sharing for their own health care without being asked first, in contrast to 20 percent of respondents who opposed this. 89 percent supported a central NHS mechanism to choose how information is shared, whilst 64 percent wanted a single NHS system to sign up to, in order to take part in research studies. Demographic factors such as age and personal experience of mental health conditions were noted to significantly affect respondents’ willingness to share data.
“We wanted to increase understanding of people’s preferences about sharing their health data,” said Dr Rudolf Cardinal, study lead and CPFT honorary consultant psychiatrist. “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.
“Interestingly, support for data sharing increased during the pandemic.”
The 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.
The results of the survey can be read in full here.
