“Far too many lives are unnecessarily lost or ruined because of blockers or delays in safe and secure access to existing health data”- says Professor Cathie Sudlow.
Major health, care and research bodies, including the Department of Health and Social Care and the Office for National Statistics, should establish a national health data service in England to improve patient care and research – an NHS-commissioned review has recommended.
Professor Cathie Sudlow’s independent review of the UK health data landscape concluded that “complex and inefficient” data systems prevent and delay crucial analysis of health conditions affecting millions of people across the UK.
The review — ‘Uniting the UK’s health data: a huge opportunity for society’, published on 8 November 2024 — stressed the need for coordinated action across multiple organisations and stakeholders to ensure the greatest benefits for patients and the public from health-relevant data.
They identified several barriers to using health data for public benefit and set our five recommendations for overcoming these barriers and transforming the national health data ecosystem.
These include the establishment of a national health data service for England, embedded within existing organisational structures but with accountable senior leadership and a ring-fenced budget.
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.”
The Sudlow Review’s five recommendations are:
- 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.
- Key government health, care and research bodies should establish a national health data service in England with accountable senior leadership.
- The Department of Health and Social Care should oversee and commission ongoing, coordinated, engagement with patients, public, health professionals, policymakers and politicians.
- 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.
- 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 review was commissioned in May 2023 by Chris Whitty, chief medical officer for England; Timothy Ferris, national director for transformation at NHS England; and Sir Ian Diamond, the UK’s national statistician, with the support of the chief medical officers in the devolved nations.
It was led by Cathie Sudlow, a professor of neurology and clinical epidemiology, former chief scientist and deputy director of Health Data Research UK.
