General Practice Data Trust (GPDT) Projects

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 health 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 James Cunningham, and Professor Søren Holm. The project has received funding from the Data Trusts Initiative and the Data Empowerment Fund.

What are we doing and why are we doing it?

The aim of the General Practice Data Trust (GPDT) projects is to find out why people have opted out of sharing their GP data, and to explore whether a GPDT could provide a method of sharing their GP data for healthcare research and planning that would be more acceptable to them through offering greater levels of data empowerment and participation in sharing.

A person accessing medical records on a tablet.

We have been 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 one 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 paused to allow NHS England to consult further and redesign the scheme.

Activities

We wanted 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.

In the next stage of our project, we then developed a technical portal which would allow people to control how their health data was shared for research purposes, based on what people had told us they wanted to see in a system overseeing the sharing of their health data.

This was tested in two focus groups with UseMYData members. Although there was broad support for a system that would enable individuals to express their views in this way, we identified a number of challenges that still need to be addressed if this is to truly deliver the control and transparency people have told us they want. The biggest challenge is one of health data literacy and the education programme needed to enable people to take control of their health data.

You can learn more about this phase of our project in the Final Report.

Outputs

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

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