In 2020, in response to the emerging COVID-19 pandemic, the government changed the rules around health data. At that time it was not possible to support the policy changes with public engagement due to the speed at which decisions had to be made.
However, data sharing initiatives established during this period may have value beyond the immediate pandemic response, including for direct care, health research, and service planning.
In June 2020, NIHR ARC Greater Manchester commissioned three Citizens’ Juries that were run online between March and May 2021. We wanted to involve the public in deliberating whether pandemic data sharing initiatives should be continued after the pandemic had ended. Each jury, consisting of 18 adults, sampled to represent a cross-section of the public, spent eight days listening to evidence and deliberating on three national data sharing initiatives.
Overall, the juries supported the data sharing initiatives introduced during the pandemic and were broadly in favour of them continuing, although they had concerns about how some initiatives had been introduced. Many jurors were concerned that there was lack of transparency about the data sharing initiatives; they thought transparency and governance important, even in a pandemic.