UK ‘not maximising the benefits of health data’, says Sudlow review
- 11 November 2024
- An independent review has called for barriers to accessing NHS patient data to be removed so that it can be used for research to further medical advances
- Professor Cathie Sudlow, chief scientist of Health Data Research UK, says that researchers' access to datasets is difficult or slow
- The review calls for health data to be seen as critical national infrastructure and a national health data service to be established in England
A review has called for barriers to accessing NHS patient data to be removed so that it can be used for research to further medical advances.
The independent review by Professor Cathie Sudlow, chief scientist of Health Data Research UK, says that complexities and inefficiencies impeding the use of health data can delay or prevent hundreds of studies, holding back progress that could improve lives.
‘Uniting the UK’s Health Data: A Huge Opportunity for Society’, published on 8 November 2024, maps the sources of health data across the UK and recommends how to manage data to improve health, while maintaining privacy and trust.
Sudlow says that health data from the NHS, social care, housing and pollution, could help to deliver equitable health, care and public services, along with research and innovation.
However the review, commissioned in 2023 by Professor Chris Whitty, chief medical officer for England, Dr Vin Diwakar, NHS England’s national director for transformation, and Sir Ian Diamond, the UK national statistician, reveals that researchers’ access to datasets is difficult or slow, often taking months or years.
Sudlow calls for health data to be seen as critical national infrastructure “that can underpin the health of the nation”.
She notes that data is accessible for Covid-19 research, but not for health conditions such as other infectious diseases, cancer, heart disease, stroke, diabetes and dementia.
“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,” Sudlow says.
The review includes five recommendations highlighting the need to remove barriers, streamline processes, and enable safe and secure data use across the UK.
Sudlow calls for government health, care and research bodies to establish a national health data service in England with accountable senior leadership.
She emphasises the importance of privacy, confidentiality, and security, following the development of secure data environments (SDEs) providing access to trusted researchers with approved studies.
The review recommends that the Department of Health and Social Care oversee engagement with the public and healthcare professionals to drive forward developments in research.
In response, Baroness Gillian Merron, health minister, 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.”
Sudlow also recommends that health and social care departments in the four nations should develop a UK-wide system for standards and accreditation of SDEs to streamline data access processes and foster proportionate, trustworthy data governance.
Responding to the review, Whitty said: “This report will help us use data more effectively for current and future patients, whilst maintaining patient confidentiality.”
