General Practice Data Trust (GPDT) pilot study: Report on patient focus groups (31 January 2023)

Summary

The General Practice Data Trust (GPDT) Pilot Study: Report on Patient Focus Groups reports on patients’ attitudes about sharing their health data for research and planning purposes.

 It is the result of research by academics at the Centre for Social Ethics and Policy (CSEP) at the University of Manchester, supported by the Patients Association, and is part of the GP Data Trusts pilot project. Funded by the Data Trusts Initiative, the project wanted to understand why so many people opted out from NHS Digital’s GP Data for Research and Planning (GPDPR) programme when it was launched in 2021.  

 The research found that patients mostly supported the use of patient data in health research, but they often didn’t like the idea that companies might make money from the use of their health data. Many felt they had not been given enough information about the GPDPR programme; some would have been happy to share their data if they had known more about the programme.  

The researchers also asked focus group participants if holding patient data in a trust would reassure them about how their data are used. This was welcomed and the report goes into more detail about what patients thought of this idea.