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The UK should “leverage” its new health data storage service for the “benefit of the Treasury coffers”, a health minister has said, as well as accelerating the discovery of new treatments for NHS patients.
Zubir Ahmed said in an interview that the government’s new Health Data Research Service (HDRS) will give researchers a single access point to national datasets for the first time and unlock “the power” of NHS data.
“There is no shame in saying, we have world leading examples of high quality care and high quality research, and we should be leveraging that for the benefit of the Treasury coffers, and patients and citizens in this country,” the health innovation minister told the Financial Times.
The idea of a central service that controls and stores NHS data forms part of a wider effort to both improve data flows and capitalise on public information held by the NHS.
The most controversial part of the service, which is set to go live by the end of next year and fully operational by 2030, is likely to revolve around the pricing of medical data, as it will charge pharmaceutical companies and research organisations for access.
Experts have warned this may fuel public concern over profiteering from private medical information.
“We have something unique in the world that belongs to us, we need to leverage that commercially, but actually before we do that, we need to leverage that for our own citizens,” Ahmed said.
HDRS is being set up with about £600mn of UK government and Wellcome Trust funding. Baroness Nicola Blackwood has been appointed to chair the new organisation, which has been approved as a government company and is currently recruiting a chief executive.
While companies and researchers already pay to access anonymised NHS data, on a cost-recovery basis, the process is disjointed and complicated, and officials believe a more centralised system would make it easier.
“The point in setting up a new chair and hopefully soon to set up a new CEO is to give them the autonomy to be able to make those commercial decisions as to what they charge and to whom,” said Ahmed. “For me the most important part is that this does not have direct interference from Whitehall.
“It’s absolutely about giving us a competitive advantage in the life science sector across the world,” he added.
A government-backed review, which was published last year, called for a central service to control and store NHS data. However, it also warned that such a shift had to be handled carefully, as “undue emphasis on [selling data] damages trust” in the system.
Sam Smith of advocacy group medConfidential said the way to provide economic stability for the NHS was “not to have ever more expensive data systems, but to use data to make the system more cost effective”.
Government officials stressed that HDRS will safeguard patient privacy through tightly limited data access, strong encryption, and monitored secure environments, and only vetted researchers will be able to analyse the data required to answer their specific research question.
They added that while several international programmes are advancing similar services, such as the European Health Data Space, Britain’s 75 years of cradle-to-grave NHS records would give it a competitive edge.
Blackwood said in a statement: “This service will deliver a triple return: better diagnostics and treatments for patients, greater efficiency for the NHS, and increased innovation and investment for the UK”.
