In May 2023, Professor Cathie Sudlow OBE was commissioned by the Chief Medical Officer for England, Professor Sir Chris Whitty, NHS England’s former National Director of Transformation, Dr Timothy Ferris, and the UK National Statistician Professor Sir Ian Diamond, to conduct a UK-wide review to map health-relevant data across the four nations. This was to include a background of the various sources and types of health-relevant data, how health data could generate insights for patient and public benefit, and priority areas of action to address current barriers, as well as deliver recommendations for system-wide reform.
Today, we welcome the publication of the Sudlow Review and its assertion that health data should be recognised as critical national infrastructure. The UK is uniquely positioned to use insights from patient data to provide better care, improve NHS planning, and drive research and innovation.
We are pleased to see UPD’s work referenced in the chapter on patient, public and healthcare professional views on the uses of health-relevant data, and particularly support the recommendation about the need for an ongoing dialogue with these groups to co-create a trustworthy system. This should build on public deliberations that have been happening recently across all UK nations, and we are keen to continue to be involved in this space.
Whilst we strongly support reducing complexity and the central message of making the simple easy and the difficult possible, this needs to happen carefully and without removing people’s rights and protections. Sustained recent public attitudes research has demonstrated that, generally, we have the social licence to move towards a more permissive system, but only with more involvement, security, transparency and visible repercussions for those who break the rules and undermine public expectations. Otherwise, this trust that takes a long time to build can be lost in an instance.