Independent review maps a route to transform the UK's health data system

Professor Cathie Sudlow OBE was commissioned to lead the independent review by the Chief Medical Officer for England, NHS England’s National Director for Transformation, and the UK National Statistician.

Scientists often have to wait months or even years to securely access health data before they can carry out crucial research into conditions like dementia, cancer, and heart disease.

The Sudlow Review is a call to action for policymakers and healthcare leaders, and emphasises that health data should be seen as critical national infrastructure requiring careful leadership and vital investment.

The review includes five recommendations that highlight the need to remove barriers, streamline processes, and enable safe and secure data use across the UK.

Professor Sudlow 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 UK has rich and abundant health data going back decades, thanks to the NHS. Data relevant to health also come from beyond the NHS, such as data on social care, housing and pollution.

This data isn’t just important for our care, it can also help to deliver equitable health, care, and public services, along with research and innovations with the potential to transform lives.

Professor Sudlow’s mission was to map sources of health-relevant data across the UK and recommend how to best manage the data to improve health, while maintaining privacy and trust.

The review tells us that datasets hold the most power when they’re linked together. It also emphasises the importance of privacy, confidentiality, and security, following the development of highly secure data environments – giving access only to trusted researchers with approved studies.

Professor Sir Chris Whitty, Chief Medical Officer for England, said:

“Using data from multiple sources is essential to improve current patient care, make the NHS more effective and improve outcomes for future patients through research. This report will help us use data more effectively for current and future patients, whilst maintaining patient confidentiality.”

Surveys show that people in the UK overwhelmingly support the use of their health data with appropriate safeguards to improve lives. One of the review’s recommendations calls for continued engagement with patients, the public, and healthcare professionals to drive forward developments in health data research.

The review also features several examples of harnessing health data for public benefit in the UK, such as the national response to the COVID-19 pandemic. But successes like these are few and far between due to complex systems and governance. The review reveals that:

• Access to datasets is difficult or slow, often taking months or even years.
• Data is accessible for analysis and research related to COVID-19, but not to tackle other health conditions, such as other infectious diseases, cancer, heart disease, stroke, diabetes and dementia.
• More complex types of health data generally don’t have national data systems (for example, most lab testing data and radiology imaging).
• Barriers like these can delay or prevent hundreds of studies, holding back progress that could improve lives.

Health Minister responsible for Life Sciences and Innovation, Baroness Gillian Merron, said:

“We need an NHS that can harness the power of research and innovation, so that we can give patients cutting-edge medicines and diagnostics – ultimately saving lives.

 

“As part of our 10 Year Health Plan we will shift the NHS from analogue to digital – accelerating research through secure access to data, whilst also driving growth and investment in the economy.

 

“I’d like to thank Professor Sudlow and the team for their work on this review, which underlines the enormous potential we can unlock in our health service, alongside recommendations on how this could be done.”

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.

Learn more and read the full review

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