A new report explores trust in the GP Data for Research and Planning (GPDPR) programme.
PIF member the Patients Association and the Centre for Social Ethics and Policy (CSEP) have published results from two patient focus groups on GPDPR.
Researchers wanted to understand the reasons why patients opted out of sharing their GP data and whether having a legal Trust overseeing the sharing of their data would address concerns.
Key findings from the focus groups included:
- Members of the focus groups mostly supported the use of patient data in health research. However, participants often did not like the idea of companies making money from the use of their health data.
- Many felt they had not been given enough information about the GPDPR programme.
- Participants were unhappy that NHS Digital had decided what it would do with their data rather than asking people to help by sharing data.
- Many participants lacked trust in organisations, including the NHS, to keep their data secure, record their data accurately and only use the data for ethical purposes.
- Distrust was connected to patients’ experiences of the NHS and previous schemes such as Care.data.
What can be done to address GP data concerns?
Participants in the focus groups were also asked what could be done to improve trust. Key findings included:
- Most participants wanted more information about what their health data would be used for and how it would be kept secure.
- Some want to be informed about every use of their data and the benefits achieved.
- Participants wanted more ongoing control over the use of their health data rather than a one-off choice. This could include agreeing to share data with certain types of organisations, or deciding whether to share data on a case-by-case basis.
- The model of a legal Trust was generally supported. Participants were keen to see patients as trustees, along with people who had medical knowledge and those with data sharing and security technical expertise.