Discover-NOW is a Health Data Research UK Hub, hosted by ICHP. With access to one of the largest depersonalised linked data sets in Europe it has the potential to revolutionise the way health data is used for research into treating and preventing disease. Realising this potential relies on public trust and confidence. 

Discover-NOW were partners of the OneLondon Citizens’ Summit and are committed to embedding the recommendations. This is particularly evident through the formation of a Citizens Advisory Group (CAG) to provide further input into decision making and policy development. 

The CAG brought together 40 North West Londoners for four workshops, with discussions centred around access to Discover data and how the value should be realised and distributed. The workshops started by capturing participant’s initial reactions and attitudes, before using expert presentations to provide essential context. This learning element enabled participant to contribute meaningfully. 

At Discover-NOW the CAG’s recommendations have informed key governance issues, such as the data access criteria, development of the Trusted Research Environment and the Hub’s future commercial policy. The findings have also been shared with the other Health Data Research Hubs nationally and are being scaled across London to inform TRE development in the capital.