Professor Cathie Sudlow’s independent review of the UK health data landscape, titled ‘Uniting the UK’s Health Data: A Huge Opportunity for Society’, was published on Friday 8 November 2024.

The review’s findings set out a bold vision for overcoming the barriers and inefficiencies that currently delay the safe and secure use of health data to improve lives. It also sets out how that can be achieved, with five key recommendations to transform the national health data ecosystem.

View the full report

Read the review’s executive summary

About the review

Every day, health and care professionals, researchers and policymakers use health data safely to improve people’s health and lives. The UK has abundant sources of data relevant to our health, both from its unique National Health Service (NHS) and a range of other sources.

The most powerful insights come from linking the different sources of data together, however, health and care professionals, researchers and policymakers face many obstacles and delays in accessing, linking and analysing health data, for crucial research and to provide the best patient care.

In May 2023, ‘Uniting the UK’s Health Data: A Huge Opportunity for Society’ 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, with the support of the Chief Medical Officers in the devolved nations.

Professor Cathie Sudlow OBE said: "We are simply not maximising the benefits to society from the rich abundance of health data in the UK. Far too often research about health conditions affecting millions of people across the UK is prevented or delayed by the complexity of our data systems. We are letting patients and their families down as a result. This review shows that getting this right holds a great prize, for our own care and for an effective NHS. We need to recognise our national health data for what they are: critical national infrastructure that can underpin the health of the nation."

The review takes a UK-wide approach in mapping health-relevant data across the four nations, including 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.

The review also includes five recommendations for system-wide reform.

Five recommendations

The Sudlow Review’s recommendations provide a pathway to establishing a secure and trusted health data system for the UK:

  1. Major national public bodies with responsibility for or interest in health data should agree a coordinated joint strategy to recognise England’s health data for what they are: a critical national infrastructure.
  2. Key government health, care and research bodies should establish a national health data service in England with accountable senior leadership.
  3. The Department of Health and Social Care should oversee and commission ongoing, coordinated, engagement with patients, public, health professionals, policymakers and politicians.
  4. The health and social care departments in the four UK nations should set a UK-wide approach to streamline data access processes and foster proportionate, trustworthy data governance.
  5. National health data organisations and statistical authorities in the four UK nations should develop a UK-wide system for standards and accreditation of secure data environments (SDEs) holding data from the health and care system.

The report was informed by wide consultation and guided by a panel of leading experts from organisations including NHS England, the Office for National Statistics, the UK Health Security Agency, the Department for Health and Social Care, relevant national organisations in Scotland, Wales and Northern Ireland, and others. Consultation details can be found in the review’s Appendices.

Watch the launch of the Sudlow Review

The event, held on Friday 8 November 2024 when the review was published, included Professor Cathie Sudlow’s overview of the review’s key findings and recommendations, followed by a panel session with experts in health data research, public and patient engagement, and policy.

About Cathie Sudlow

Professor Cathie Sudlow OBE
Professor Cathie Sudlow OBE

Professor Cathie Sudlow was commissioned to lead this review in light of her expertise in pioneering data science initiatives. Cathie was Chief Scientist and Deputy Director of Health Data Research UK and Director of the British Heart Foundation (BHF) Data Science Centre, which enables data-led research to improve heart and circulatory health. She stepped down from these roles in August 2024 to lead the major, new Adolescent Health Study and maintains an advisory role at HDR UK following her new appointment. She is also Chair of Neurology and Clinical Epidemiology at the University of Edinburgh.

Cathie’s research interests have always been firmly embedded in the world of big data. Over the last 15 years, her focus has been on leading large-scale, collaborative, open-science initiatives that enable a better understanding of the causes and consequences of health and disease across the life course, leading to new and improved approaches to prevention, diagnosis and treatment. 

From 2011 to 2019, she led efforts to follow the health of UK Biobank participants through linkage to national health datasets. As Director of the BHF Data Science Centre, she helped establish the NHS England National Secure Data Environment, which enables secure access to de-identified data from health settings.

Cathie is fellow of the Academy of Medical Sciences and of the Royal Society of Edinburgh and was awarded an OBE for services to medical research in 2020.  

For more information, contact sudlowreview@hdruk.ac.uk