Citizen Juries support health data sharing in Covid pandemic

The National Institute for Health Research ARC Greater Manchester, NHSX and the National Data Guardian for Health and Social Care commissioned a set of three online 'Citizen Juries' about health data sharing in a pandemic between March and May 2021, finding broad support for increased data sharing in response to the Covid pandemic. 

The feedback has been published as a report, and found that after 36 hours of informed deliberation and information gathering, the 53 participants in the juries concluded that the government was right to use emergency powers to share patient data during the Covid pandemic but greater transparency is needed.

The juries were most supportive of the decision to introduce OpenSAFELY (77% of jurors very much in support) and least supportive of the decision to introduce the NHS COVID-19 Data Store and Platform (38% of jurors very much in support);

A majority of jurors were in favour of all the data sharing initiatives continuing for as long as they were valuable (potentially beyond the pandemic and for non-Covid 19 uses), with support ranging from 58% for the NHS COVID-19 Data Store and Platform to 87% for OpenSAFELY across the three juries.

"Public involvement not only helps to demonstrate trustworthiness by opening up the system to scrutiny by the people whose data it will use. It also improves the integrity and strength of the system itself," said Dr Nicola Byrne, National Data Guardian, at the launch of the report. "It reminds system designers that it’s important not just to believe in their project but also, as with any scientific endeavour, to keep doubting, to ensure that the evidence is constantly and openly tested. A two-way process also improves understanding about what conditions need to be met in order to win the public’s support for data use. The public trust that the health and care system needs to create is not a blind trust, but a trust that is informed, strong and sustained."