DATA-CAN welcome report on public views on use of health and care data
The OneLondon Citizens’ Summit was a large scale and in-depth public deliberation on uses of health and care data. It involved 100 Londoners in a four-day process of detailed discussion and debate. Participants reflected London’s diverse population, came from all 32 boroughs, and had a mix of attitudes towards data sharing. They were provided with technical information by experts and practitioners. The work was overseen by an independent advisory group.
The report from the Summit highlights and emphasises significant and important points in the way that the public expect their health data to be used.
Dr Charlie Davie, Hub Director for DATA-CAN said: “DATA-CAN is an organisation focused on putting the patient voice at the heart of what we do. We are grateful for the extensive deliberative work undertaken by OneLondon over recent months with citizens of London, and for the work distilling the findings from the OneLondon Citizen’s Summit into this report.”
The key findings of the report have been endorsed by DATA-CAN. Recommendations from the report that are particularly relevant to the work of DATA-CAN include:
- Ensuring reasons for data sharing are always in the public interest, and consulting with patients and the public to inform data sharing decisions
- Being transparent about data sharing, uses and benefits – including publishing an annual report from the NHS describing how and why data has been shared
- The importance of focussing on the “five safes”.
The report recommends that patient and public representatives sit on decision making groups of health and care organisations who make decisions on data sharing, and recommends these organisations also consult a wider advisory group that includes patient and public representatives. DATA-CAN is an organisation built on the principle of working in partnership with patients and the public to make high-quality health data more accessible for cancer researchers, clinicians and other health professionals, in a safe and transparent way, to improve care and save lives.
Pete Wheatstone, DATA-CAN Patient and Public Involvement & Engagement Group Chair says: “As patients, we have been key members of the DATA-CAN team since its inception. DATA-CAN has invested heavily in establishing us at Board and Management level and we have put in place a wider PPIE group, supported by an expert adviser, and have offered long term training and development.
“The next step for us all is to establish a much wider engagement mechanism for patients, carers and relatives. This ambition is supported by the recommendations given in this report.”
The OneLondon Citizens Summit has demonstrated the benefits of deliberative engagement with citizens and shown that discussions can be had with citizens about complex issues. The recommendations in the report have also been informed by views and insights from marginalised and vulnerable communities.
Commenting on the Report, Prof Mark Lawler, Scientific Lead of DATA-CAN and Professor of Digital Health at Queen’s University Belfast said: “This report and the use of a deliberative approach, engaging with patients and the public is incredibly important. It emphasises the absolute requirement for trust and transparency in the use of data. Having this conversation across the United Kingdom will be critical in our efforts to enhance human health through the use of data.”
DATA-CAN and OneLondon have worked closely together from DATA-CAN’s inception, and DATA-CAN has been committed to learning lessons from the methods used in this deliberative work to ensure that patient and public views are at the heart of what we do.
Read the full report: Public deliberation in the use of health and care data