Professor Cathie Sudlow OBE was commissioned to lead the independent review by the CMO for England, NHS England’s National Director for Transformation and the UK National Statistician.
Scientists often 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.
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.”
The review includes five recommendations that highlight the need to remove barriers, streamline processes, and enable safe and secure data use across the UK:
- 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.