A new £600 million service aims to speed up medical research by creating a single access point to national health datasets.
The new Health Data Research Service seeks to reduce the barriers that researchers face by simplifying access to primary care, hospital and mortality data. The UK government is funding the service with up to £500m with another £100m coming from the Wellcome Trust.
The government also said it wants to fast track clinical trials to accelerate the development of the medicines. It wants to cut the time it takes to get a clinical trial set up to 150 days by March 2026 - from over 250 days at the moment - and do this by reducing bureaucracy and standardising contracts so time isn’t wasted on negotiating separate details across different NHS organisations.
Medical researchers can already access some NHS datasets but they can also face delays and obstacles in doing so. For example, they can’t access all health and health-relevant data at national or regional level, and differences in how data is collected, sorted, linked and stored add to the complications.
Wellcome said this means that researchers, for example, may have to submit multiple applications to access different datasets to compare information across regions, slowing down their progress. The new service, due to be in operation by the end of 2026, will allow researchers to access data faster and allow them to harness a wider range of patient and other health-relevant data, Wellcome said. It should also help increase participation in clinical trials by making it easier for researchers to identify the patients who could benefit from being involved. The new service will be housed at the Wellcome Genome Campus in Cambridgeshire.
John-Arne Røttingen, chief executive of Wellcome, said: “Providing a single, secure service for approved researchers will take away the significant overhead associatedof locating, accessing and comparing disparate datasets. It will create opportunities for patients to access new treatments through trials that would otherwise have been hard to arrange or conduct.”
Wellcome said that simplifying access will not affect security of patient data. “The new service will allow for de-identified data to be analysed without being exported. This means health data will remain in existing Secure Data Environments, managed by the appropriate data controllers,” it said.
Creating the service was a recommendation of the Sudlow review into the use of health data. Its author, Professor Cathie Sudlow, said the new service has the potential to be “a game-changer”, by accelerating data-driven research. “The service should enable faster, more reliable access for approved researchers to the data needed to tackle society’s most pressing health research needs – to develop and test new approaches for preventing, diagnosing and treating health conditions such as cancer, dementia, heart disease, depression, arthritis and infectious outbreaks,” she said.
Emma Walmsley, Chief Executive Officer of GSK also welcomed the move: “The UK has unique potential to bring health data securely together with an NHS system that recognises the value of innovation, to accelerate and deliver the next generation of medicines and vaccines for patients. This offers value to society and to the economy,” she said.
Steve Bates, CEO of the UK Bioindustry Association, said: “We have a wealth of small innovative companies in the UK, working in an ecosystem, that are developing solutions to help us prevent, detect and treat disease better than before. By improving the data access landscape for these companies they can bring benefits to NHS patients, and create jobs to grow our economy faster.
The UK’s life science sector has been missing out on £15 billion a year over the last decade as it has fallen behind international rivals in competitiveness, according to research commissioned by SCI. Clinical trials initiated in the UK have also decreased by 8% since 2017/18, something which the research attributed to slow regulatory timelines, poor recruitment and high costs. This loss of competitiveness has resulted in an incremental GVA loss of £2.6bn every year, the report: Unlocking Value in Life Sciences calculated.
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