Published: 8 November 2024

In response to Professor Cathie Sudlow's review, Uniting the UK's Health Data: A huge Opportunity for Society, Nicola Perrin, Chief Executive of AMRC, commented:

“Urgent action is needed to unlock the power of NHS data to transform research. Professor Cathie Sudlow’s review rightly concludes that the health data research ecosystem isn't working, meaning patients and the public are missing out. 

“We agree that a coordinated joint strategy is essential to help inform the development of a national health data service. Public confidence will be key to success, so we’re glad to see that the review highlights the importance of engagement with patients, the public and health professionals. 

“We’re pleased to have contributed to this review and look forward to continuing to work with colleagues across the health sector to ensure that data-driven research can thrive.”

Professor Cathie Sudlow's independent review was commissioned by Professor Sir Chris Whitty, the Government's Chief Medical Advisor, Professor Sir Ian Diamond, the UK's National Statistician, and Dr Timothy Ferris, previously NHS England's National Director of Transformation (now Dr Vin Diwakar, NHS England's Medical Director for Transformation).

AMRC fed into Professor Sudlow's review, sharing details of charity patient registries, outlining the challenges that charity-funded researchers face with data linkage, and highlighting the importance of maintaining public confidence in how health data is used.

For more on this topic, read our recent briefing Unlocking patient data to transform research and care.