Patients want more control over how their health data are shared

More than a million people opted out of sharing their GP data when NHS Digital announced its GP Data for Research and Planning programme in 2021. This study explores why patients were so concerned and what should be done to improve confidence.

This blog post is available on the Accelerate Science webpage and reproduced below.

Involving patients in decisions about health data sharing

Dr Sarah Devaney, Senior Lecturer in Healthcare Law and Regulation, University of Manchester NHS Digital’s General Practice Data for Planning and Research programme (GPDPR) proposed to automatically collect patients’ primary care (GP) data, with the intention of increasing data sharing with different partners. Its launch prompted an avalanche of opt-outs, with more than a million people opting out of sharing their data in a month, combining to the total of three million people currently withholding access to their NHS data because of concerns about how it would be managed and used.

This opt-out introduces a significant risk of bias to the data available for healthcare research and policymakers, which could render research invalid and lead to suboptimal, or even incorrect, health planning and policy decisions. While restrictions have been imposed on the purposes for which those data could be accessed and by whom, it is clear that public concerns about data sharing and use have not yet been sufficiently addressed. In response, the introduction of the GPDPR has been paused with no timetable for its resumption in place. Understanding opt-outs to minimise bias To respond to public concerns, we need trustworthy data stewardship practices that empower people to set the terms of their health data use. To meet this challenge, the General Practice Data Trust (GPDT) pilot explores how to give back control of their data to people who have opted out of the GPDPR programme and therefore provide an opportunity to participate in life saving research. As you might imagine, this is not a simple task. Initially, our focus has been on gaining an understanding of why people opted out of GP data sharing. NHS Digital data shows opt-out rates vary by region, from a high of 7% in London, to a low of 4% in the North East and Yorkshire, while the age group most likely to opt out are 30-39-year-olds. It does not, however, shed much light on exactly why these patterns emerge.

To solve this mystery, we conducted online surveys and interviews with people who have opted out of data sharing, as well as running focus groups with the Patients Association. We asked them two main questions. First, why they made the decision to opt out of sharing their health data. Second, we asked if a Data Trust would provide them with enough controls to change their mind and become willing and active participants in sharing their primary care data. Data Trusts are organisations overseen by Trustees who have legal obligations to act in the interests of the beneficiaries to the Trust, who in this case would be patients wanting more control over the terms of their health data sharing.

Patient data is seen as a valuable resource for the improvement of health knowledge and development of medical treatments. While people are concerned about sharing personal information - particularly details about why, how, and with whom data is shared - there is also a lot of evidence that patients would like to support healthcare research by sharing their data. We are hopeful that by helping people understand exactly how their data will be used, building trust and asking them for permission in a different way will lead to more participation.

Piloting change

The Data Trusts Initiative has been investigating how to move the debate about data trusts from theory to practice. In 2022, it announced the first cohort of Data Trust pioneers who have been leading the creation of real-world data trusts.

The Brixham Data Trust is working to empower the community of the small fishing town of Brixham in Devon in their data sharing and use, while the Born in Scotland Data Trust is building infrastructure for trustworthy data stewardship around a pilot birth cohort study that ultimately seeks to tackle the economic and healthcare inequalities affecting communities in Scotland.

The General Practice Data Trust, which I lead, is exploring how ’bottom-up’ data stewardship could be applied to NHS patient data. In the long-term, our ambition is that the GP Data Trust pilot helps to demonstrate how listening and responding effectively to patients’ concerns about possible harms from the use of their data can lead to the establishment of systems that allow them to share their data on their terms.

Building confidence

The launch of these inaugural pilot projects marks a significant step in a project that has taken the Data Trusts Initiative from theory to real-world deployment in three fast-paced years. The GPDT is already beginning to share some of the outcomes of its work with patients and stakeholders, giving insights into patients’ views about health data sharing and their preferences for the regulation around this. You can access our first report with the Patients Association here. Later in the spring we will be publishing a second report with accompanying animation on the implications of patients’ views on health data sharing for technical health data management systems. This will be followed by the publication of more detailed analysis of the data gathered during the GPDT.