Research shows patients want more control over how their health data are shared
Patients mostly happy to share their data but want to know who and how the information will be used, finds new report from University of Manchester and the Patients Association
Patients support the use of patient data in health research but do not like the idea of companies making money from the use of their health data, finds a new report based on the views of 24 people who took part in two focus groups.
Members of the focus groups were selected to give a diverse representation of age, ethnicity and region.
Forming part of a wider GP Data Trust pilot project, the work by researchers at the Centre for Social Ethics and Policy (CSEP) at the University of Manchester also found high levels of mistrust in organisations, including the NHS, to keep their data secure, record their data accurately, and only use the data for ethical purposes among the patients taking part in the research.
Rachel Power, Chief Executive of the Patients Association, said: “It’s clear that the attempted introduction of schemes to share patients’ health information has damaged patients’ trust in organisations, including the NHS. This is not helpful to anyone, including patients who do understand the value of sharing data for research, healthcare planning and their own well-being.
“CSEP’s research is extremely important, as it suggests a way forward to rebuild trust and, eventually, share healthcare data.”
Sarah Devaney, lead researcher on the project at the University of Manchester, said: “Patients are calling for greater information and transparency about how it is proposed to use their GP data in health research and planning. It’s very important that their views are taken on board in developing health data sharing programmes which give them more control over their data. This can help regain their trust and make them more likely to share their data in vital health research.”
The GP Data Trusts pilot project was prompted by the mass opt-out by patients from health data sharing in response to the announcement of the GP Data for Planning and Research (GPDPR) programme in 2021. The programme has yet to launch. CSEP researchers wanted to understand what had prompted 1 million people to opt-out and what would need to be in place to make people comfortable about sharing their health data.
What the research found
Many participants in the study felt they had not been given enough information about the GPDPR programme. Some participants would have been happy to share their data if they had known more about the programme, but because they had not been given enough information to decide for themselves, they opted out.
Participants were unhappy that NHS Digital, which had launched the programme, had, in their view, simply decided what it would do with their data, rather than asking people to help by sharing their data.
What could be done better
Most participants wanted more information about what their health data would be used for if they shared it and how it would be kept secure. Some wanted to be informed about every use of their data and the benefits achieved.
Participants overwhelmingly wanted more ongoing control over the use of their health data rather than a one-off choice whether or not to share them.
A legal Trust
Holding patient data in a legal Trust was generally supported because participants believed it may help patients to ensure their choices about how their health data are shared, are respected. Participants were keen to see patients involved as Trustees, along with people who had medical knowledge and those who have expertise in the technical aspects of data sharing and security.
Conclusions of the study
Lack of trust in the system was the main reason patients opted out of sharing their GP data in the GPDPR programme. They did not trust that their GP data would be handled securely and only used for purposes they consider ethically acceptable.
The report suggests that to be trusted, any process of data sharing must provide patients with information about who their data is being shared with and why. It must also give patients more opportunity to control the use of their data, for example by being represented as and by Trustees in a legal trust.
Without these features, patients’ concerns over sharing their health data will remain and these could lead to a lack of trust in future health data sharing initiatives.