To create and sustain public confidence we must understand and respond to people’s expectations around data sharing and ensure we operate in line with these expectations. The OneLondon Citizen’s Summit took the first steps to achieving this, bringing together 100 Londoners from across all 32 boroughs to debate and deliberate some of the complex issues around health and care data. 

Participants were recruited to be reflective of London’s diverse population and held a range of attitudes towards data sharing. Across four days, a mix of plenary sessions with experts and in-depth table discussions were used to support participants to weigh-up how health and care data should be used, who should have access to it, and for what purpose. Information was presented in a balanced way to facilitate genuine conversations and real-world examples helped put the trade-offs into context. 

The work directly informed the IG framework that underpins data use in London, and it has directly influenced the national policy debate. The work was also cited in the National Data Guardian’s reports, and within the HDRUK proposals for Trusted Research Environments (TREs); and wider commendation of the work was made by Understanding Patient Data and the HSJ. A year on from this work, progress had been made to ensure that 80% of London’s ICSs are connected to the ‘Level 1’ OneLondon record.