The Citizens’ Advisory Group comprises 100 Londoners reflective of the Capital’s diverse population. The initial focus of the first workshops that took place 10/11 June and 1 July 2023 was on research and development as part London’s successful application to create a Secure Data Environment (SDE) which will use data to improve research capabilities in the capital and health outcomes for Londoners.
The Citizen Advisory Group was asked to debate and deliberate a range of options, including who should be able to access the SDE, what safeguards should be in place and how much they should be charged to ensure NHS costs are covered and London benefits from any innovations that result. They then produced a series of recommendations that will then inform the London Health Data Strategy and development of the SDE moving forwards. The recommendations will be published in due course.
Members of the Citizen Advisory Group will continue this important work over the next few years with further discussions about how health and care data is used.