CASE STUDY: Data trusts? Putting people in control of their data?

In May 2021, NHS Digital announced that they would collect patients’ primary care (GP) data so that it could be used in a non-identifying form in medical research and planning.  Over a million people opted out of the programme, prompting NHS Digital (external website) to delay it to provide more time to speak with people about their concerns. 

By the University of Manchester research team: Dr Sarah Devaney, Professor John Ainsworth, Ms Catherine Bowden, Dr Nigel Burns, Dr James Cunningham, and Professor Søren Holm.

In late 2022, researchers based at The University of Manchester, began running the General Practice Data Trust (GPDT) pilot study (external website), funded by the Data Trusts Initiative (external website), to find out why people opted out of sharing their GP data, and to explore whether a data trust would provide a method of sharing their GP data that would be more acceptable. 

Debates on sharing data often focus on the potential risks involved rather than the potential benefits. It is also widely acknowledged however that sharing health data is crucial for the development of medical treatments and a wide range of data is needed if those treatments are to be effective across the population. The medical response to the COVID-19 pandemic has been a powerful reminder of this.

Research shows (external website) that in general people support the idea of sharing their data to improve healthcare. However, the scale of the opt-out from NHS Digital’s programme tells us that there are concerns that need to be addressed before patients have sufficient confidence to contribute their data to this beneficial resource. 

A GP Data Trust would set out specific conditions under which GP data was shared; for example, which 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. 

The pilot project explores questions such as what rules people would like to see the data trust work under, who they think might be a suitable trustee, and whether a data trust could overcome some of the problems of existing health data sharing approaches. 

The views of patients and GPs will be collected via online surveys and interviews running from 1 October to 30 November 2022. 

Complete a patient survey (external website)

You will also have the option of taking part in an interview, for which you will receive a Love2Shop voucher in recognition of your time. If you would like to find out more please contact Sarah.Devaney@manchester.ac.uk or Catherine.Bowden@manchester.ac.uk

Findings will be shared with participants who tell the team they would like to hear about the results of our study, as well as with groups working to develop ways to ensure that patients are at the centre of how their data can be used to improve health treatments and services. The results will also be shared online and via social media.