Barriers to accessing health data should be removed, review says

The UK is not maximising the benefits of NHS patient data, an independent review has found.

The review, carried out by Professor Cathie Sudlow, has called for barriers to accessing NHS patient data to be removed so that it can be used for research to further medical advances.

Sudlow says that complexities and inefficiencies holding back the use of health data result in lost opportunities to carry out important studies that could improve care.

The review was commissioned in 2023 by  Professor Chris Whitty, chief medical officer for England. Entitled ‘Uniting the UK’s Health Data: A Huge Opportunity for Society’, the review maps the sources of health data across the UK and recommends ways of managing data to improve health, while maintaining privacy and trust.

Currently, the review finds, researchers are finding that it can take months or years to access the datasets they need.

Data can ‘underpin the health of the nation’

Sudlow, a neurologist, 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. She calls for health data to be seen as critical national infrastructure “that can underpin the health of the nation”.

While data is accessible for Covid-19 research, the review finds, it is not accessible for health conditions such as other infectious diseases, cancer, heart disease, stroke, diabetes and dementia.

The review points out that the unique nature of the NHS, which holds patient data belonging to 68m people going back decades, provides a golden opportunity to carry out research on large datasets.

“We are simply not maximising the benefits to society from the rich abundance of health data in the UK,” Sudlow said. “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 cover the need to remove barriers, streamline processes and enable safe and secure data use across the UK.

“There is also a need to prioritise and fix issues affecting access to data at national scale from hospitals, medicines data, laboratory data (including genomics), national audits and registries, screening data, social care data and unstructured clinical data,” the review says.

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) that provide 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.

It also recommends that health and social care departments in the four nations develop a UK-wide system for standards and accreditation of SDEs to streamline data access processes and foster proportionate, trustworthy data governance.

National data on hospital and high-cost medicines, available via the single national data access system, should be delivered by the end of 2025, the review says. However, it cites the lack of electronic prescribing medication administration (EPMA) systems in every hospital as a barrier to collating this data, adding that “not all existing EPMA data have been incorporated into national data collection systems”.

Responding to the review, Whitty said: “This report will help us use data more effectively for current and future patients, whilst maintaining patient confidentiality.”