The response to the coronavirus pandemic brought data to the heart of government decision making like never before – but what lessons does government need to learn about data sharing from the experience?
This paper summarises a roundtable discussion bringing together public servants and others involved in General Practice Data for Planning and Research (GPDPR), a scheme intended to share patient data across the health system. It found that:
- Although much of the discussion focused on what could be improved for similar future schemes, participants identified some successes with GPDPR, including the intentions behind the project being good, promises to improve, conversations being prompted, a general appreciation of the importance of data and the fact that the government paused the scheme following criticism. Patients opting out of their data being used showed public awareness, but could also be a problem if it led to the data becoming unusable.
- The lack of public consent and a lack of communication were real problems, and showed lessons from earlier schemes (particularly care.data) had not been learnt.
- Greater public involvement at all stages of the process, with honest communication from government about risks as well as benefits, and better collaboration between government, the NHS and expert non-government organisations, are vital. This should help improve a project as well as earning public trust.
- There are models that the government and health system can learn from. OpenSAFELY, the field of genomics and a growing body of literature on public engagement, as well as lessons from previous experiences such as care.data, were all cited.
This is the fourth of six papers in the series, each based on a roundtable discussion around a particular case study or theme. The remaining write ups will be published in January 2023, with a short report drawing together key themes and lessons to follow in February 2023.
We would like to thank Scott Logic for supporting this project. Read more from Scott Logic about the Data Sharing in Government research project on their website.