In May 2021, NHS Digital announced it would collect the data GPs hold about patients so that the information, stripped of any way of identifying individuals, could be used in research and planning.

This was the GP Data for Research and Planning (GPDPR) programme. But within one month of the announcement, more than one million patients opted out of the programme.

This mass opt-out forced NHS Digital to delay the launch of the programme to give it more time to speak with patients about their concerns. The programme has yet to launch.

Researchers at the Centre for Social Ethics and Policy (CSEP) at the University of Manchester are interested in 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 those concerns.

A Trust

A Trust is a well-established legal structure where Trustees manage something on behalf of someone else, who is known as the Beneficiary.  The Trustees are under legal duties to only act in the best interests of the Beneficiary.  In a GP Data Trust this would mean that the Trustees must make sure that the data were only used in ways that the patients – the Beneficiaries – wanted.

Working with the Patients Association, CSEP held two focus groups with patients to explore these issues.

The findings from these focus groups and recommendations are published today, in the report, General Practice Data Trust (GPDT) Pilot Study: Report on Patient Focus Groups.

What we found

Members of the focus groups mostly supported the use of patient data in health research. But participants often did not like the idea of companies making money from the use of their health data.

A lot of participants felt they had not been given enough information about the GPDPR programme.  Who would get their data?  What would they use the data for? Some participants would have been happy to share their data if they had known more about the programme, but because they had not been given enough information to decide for themselves, they opted out.  Others did not opt out, but were also concerned.

Participants were unhappy that NHS Digital had, in their view, simply decided what it would do with their data, rather than asking people to help by sharing their 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. This was connected to patients’ experiences of the NHS and previous schemes such as

What could be done better

Most participants wanted more information about what their health data would be used for if they shared it 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 whether or not to share them.  This control could include agreeing to share data with certain types of organisations, but not others, or even deciding whether to share their data on a case-by-case basis.

The model of a legal Trust was generally supported because participants believed it may help patients to ensure their choices about how their health data are shared, and are respected.  Participants were keen to see patients involved as Trustees, along with people who had medical knowledge and those who have expertise in the technical aspects of data sharing and security.

Ethically acceptable

It is clear from this report that one of the main reasons patients opted out of sharing their GP data in the GPDPR programme was that they did not trust that their GP data would be handled securely and only used for purposes they consider ethically acceptable. 

Our report provides evidence that a trustworthy process of data sharing must provide patients with information about who their data is being shared with and why, and give patients more opportunity to control the use of their data, for example by being represented as and by Trustees in a legal trust. 

Without these features, patients’ concerns over sharing their health data will remain and these could lead to a lack of trust in future health data sharing initiatives. 

How you can support the findings of this report
Use the social media buttons below to share the report to help raise awareness of patients’ concerns about sharing their health data.
Follow and contribute to the public debate about GPDPR by using the hashtag #GPDPR.
Contact NHS Digital at [email protected] to give your views on sharing GP data for health research and planning.