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 Dr Sarah Devaney and the other team members are Professor John AinsworthMs Catherine BowdenDr Nigel BurnsDr James Cunningham, and Professor Søren Holm.

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.

Accessing medical records on a tablet

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, 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.

We want to understand why so many people opted-out of sharing their data. To do this, we are asking:

  • People who opted out of sharing their GP data; and
  • General Practitioners

to complete our survey.

The survey explores the reasons why people opted out of sharing their GP data, asks GPs about their role in data sharing, and explores views on an alternative system known as a Data Trust.

What is a Data Trust?

One option for managing the sharing of patient data is by using a GP Data Trust. Such a Data Trust would set out specific conditions under which GP data was shared, for example in relation to the people or organisations the data is shared with, and for what purposes. The working of the Data Trust would be overseen by a trustee who would have legal duties to patients who choose to share their data through the Trust.

Why we would like you to complete the survey

We are looking at how best to legally and technically structure a GP Data Trust but it is important that we look at these elements based on a good understanding of why people have opted-out of sharing their health data. This is why we are conducting a survey of both patients and GPs. Simply, the better we understand peoples’ reasons for opting-out, the better our proposed solutions.

The Survey

Each survey will take approximately 15 minutes to complete.

Your data will be held and treated with absolute confidentiality. It is important that you understand the details of what we are asking you to do and how we will treat any personal information that you disclose, so we ask that you read and understand the relevant information sheet referred at the beginning of the survey.

We would also very much like to interview a number of patients and GPs in more detail. If you are interested and willing to do this please respond accordingly to the relevant question at the end of the survey.

For Patients

For GPs

Thank you for your contribution to this research project.