An independent review has found that complexities and inefficiencies are impeding the use of the UK’s rich sources of health data to improve people’s health and lives.
Researchers and analysts frequently have to wait many months – or even years – to securely access health data to improve care and for vital research into diseases like dementia, cancer and heart disease.
Led by Professor Cathie Sudlow OBE, the independent review was commissioned by the Chief Medical Officer for England, NHS England’s National Director for Transformation, and the UK National Statistician.
The Sudlow Review calls on policymakers and healthcare leaders to recognise that health data should be treated as critical national infrastructure with leadership and investment to match.
It provides five recommendations to remove barriers, simplify 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.
“For example, research about health conditions affecting millions of people across the UK is far too often prevented or delayed by the complexity of our systems for managing and accessing data.
“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 healthcare system for everyone.
“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, abundant sources of health data and is unique worldwide due to the NHS and a population of 67 million people all largely seen in the same health system with data that goes back decades.
The data are important for patient care but can also be used to support the delivery of equitable health, care and public health services, as well as research and innovation to benefit patients and the public.
Data relevant to health also come from sources beyond the NHS: data on social care, housing, pollution and more.
Professor Sudlow was commissioned to map the health-relevant data across the four nations of the UK and to evaluate how data can be better used to improve health while maintaining privacy and trust.
She consulted hundreds of individual and organisational stakeholders as part of the review process, including patients and the public.
The review emphasises that the real power comes when datasets from different sources are linked together.
For example, we can only really know if breast cancer screening is improving cancer outcomes by connecting the data from national breast screening programmes to data on cancer cases and long-term survival from national cancer registration systems.
It also stresses the importance of the privacy, confidentiality and security of health data, with the development in recent years of highly secure data environments to provide access to de-identified data only for approved studies and certified analysts.
Prof 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 over the last 15–20 years have consistently shown that people in the UK overwhelmingly support the use of their health data, with appropriate safeguards, to benefit themselves and others.
One of the five recommendations in the review calls for ongoing and coordinated engagement with patients, public and health professionals to guide developments, noting the need for a single system in England for NHS data access opt-outs that does not impose any burden on busy GPs.
The review points to several examples of transformational use of health data for public benefit in the UK.
In particular, the national response to the COVID-19 pandemic drove remarkable progress in broadening secure access to health-relevant data for patient and public benefit.
One example is the data-driven RECOVERY trial which led to the widespread use of treatments such as dexamethasone to treat severe COVID-19, saving hundreds of thousands of lives worldwide.
But successes like this are all too uncommon because of the complexity of the UK’s data systems and data governance, it reports.
Ian Diamond, UK National Statistician, said: “The opportunities to use data to help to improve the health of our fellow citizens are unlimited.
“This can happen both through improving the delivery of healthcare and by informing policy for prevention and cure.
“However, this will only happen effectively if both health and socioeconomic data are shared smoothly in an ethical, secure and transparent manner”
