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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 found.
The review — ‘Uniting the UK’s health data: a huge opportunity for society’, published on 8 November 2024 — recommended that the NHS establish a national dataset on medicines that are prescribed and dispensed in hospitals to monitor their “effectiveness and safety”.
The review concluded that access to datasets is difficult or slow, often taking months or years. Also, while data are accessible for analysis and research related to COVID-19, they are not available to tackle other health conditions, such as other infectious diseases, cancer, heart disease, stroke, diabetes and dementia.
As a result, the review made five recommendations, including that “key government health, care and research bodies should establish a national health data service in England with accountable senior leadership” to support research and analysis.
“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,” it said.
It recommended that “national data on hospital and high-cost medicines available via the single national data access system” be delivered by the end of 2025.
However, the review cited 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”.
It also recommended that the NHS complete its rollout of EPMA systems across all UK hospitals and “reinvigorate efforts to incorporate data from all hospital EPMA systems into national data collection”.
The review was commissioned 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. It was conducted by Cathie Sudlow, a professor of neurology and clinical epidemiology, former chief scientist and deputy director of Health Data Research UK.
Responding to the review’s report, Janet Valentine, executive director of innovation and research policy at the Association of the British Pharmaceutical Industry, said: “Access to health data is essential for the research and development of new medicines and vaccines, and so we fully endorse the recommendation to establish a national health data service.
“In taking this recommendation forward, it will be essential that government understands user needs, engaging across all research sectors from the outset to design and implement a shared vision.”
Commenting on her findings in the review, 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.”
