General Practice Data Trust (GPDT) Pilot Study

Exploring why people opt out of sharing their GP data, and whether a GPDT would provide a more acceptable option.

Who are we?

We are a group of researchers based at The University of Manchester who are interested in exploring ways in which patients can have more control over how their GP data is shared for health research and service planning purposes. Some of us have a background in healthcare law, some in healthcare informatics and some in the ethics of healthcare.

The team is led by Professor Sarah Devaney and the other team members are Professor John Ainsworth, Dr Catherine Bowden, Dr Nigel Burns, Dr James Cunningham, and Professor Søren Holm. The project is funded by the Data Trusts Initiative.

What are we doing and why are we doing it?

The aim of the General Practice Data Trust (GPDT) pilot study is to find out why people have opted out of sharing their GP data, and to explore whether a GPDT would provide a method of sharing their GP data for healthcare research and planning that would be more acceptable to them.

We are doing this because in 2021 NHS Digital, part of the NHS, announced that they were going to change the way that patients’ primary care (GP) data was collected and used.

In response to the announcement, in just one month over 1 million people opted out of sharing their data for health research and planning purposes. The implementation of NHS Digital’s proposed scheme has now been delayed to allow NHS Digital to consult further.

Activities

We want to understand why so many people opted-out of sharing their data. To do this, we ran two surveys, one for people who opted out of sharing their GP data, and one for General Practitioners (GPs). We also interviewed patients who indicated that they had opted out of sharing their GP data, interested stakeholders including campaign groups and others seeking solutions to this problem, and GPs and Practice Managers. In addition we conducted two focus group sessions in partnership with the Patients Association.

The fantastic response we had to these activities has provided valuable data for us to explore the reasons why people opted out of sharing their GP data, ask GPs about their role in data sharing, and explore views on an alternative system known as a Data Trust.

Outputs

You can see some of the results of our study so far by following these links:

• Report on Focus Groups
• Animation of Technical Data Flow
• Blog Post: Involving patients on decisions about health data sharing
• Digitober Case Study

Our analysis of the data is continuing and we hope to be able to share some more results soon, watch this space!

For more information, follow us on Twitter - @GPDT_Project.