UK moves ahead with GP patient data sharing plan
The UK government has asked the NHS to start putting together the platforms that will allow anonymised data from consenting patients, held by GPs, to be made available to population-based research projects.
Health and Social Care Secretary Wes Streeting has issued a 'direction' to NHS England to set up a service that will allow certain information from GP health records "to be collected and disseminated to specific research studies approved to access that information."
Streeting announced the plan to allow NHS England to put the processes in place to share primary care data with scientific researchers in 2024, with the aim of making it easier for GPs to provide information such as diagnoses, prescriptions, and care referrals.
Those approved projects are the UK Biobank, Our Future Health, and Genomics England's 100,000 Genomes Project, which have said harnessing NHS GP data – almost unique in the world for its scale, breadth, and time span – will ramp up the potential of their work to uncover new findings with implications for human health.
According to Prof Sir Rory Collins, chief executive and principal investigator of UK Biobank, having access to de-identified GP data for its 500,000 volunteers will transform the database's research capabilities, and the research community has been "clamouring" for such a resource since the early 2000s.
"Over 20 years ago, I, along with half a million other UK volunteers, signed up to share my de-identified health data with scientists around the world. We have donated blood and urine samples, had our blood pressure and grip strength measured, completed detailed questionnaires, undergone MRI scans of our brains and bodies, and had our genetics and the proteins in our blood analysed," said Collins.
"All these data have been combined with NHS information from our hospital visits, cancer registries, and more, [but] we have not been able to include lots of the vital information about our health held by our […] GPs."
The new route means that GPs will act as data controllers and will be allowed to pass on information from health records, without having to inform consenting participants each time. Anyone who is not participating in the three approved projects will not have their data shared.
"Where people have given consent for their health records to be used in a cohort study such as UK Biobank or Our Future Health, it is absolutely right that data should flow according to patient choice," commented Nicola Perrin, CEO of the Association of Medical Research Charities (AMRC).
"Today's announcement is an important step to enable this to happen, with appropriate safeguards," she added.
"Data from primary care is often the richest source of health information, containing real-world evidence about the multiple conditions that many people live with. We look forward to seeing the results of research that will now be possible, tackling a huge range of different diseases, ranging from arthritis and asthma, to dementia and diabetes."
There remain concerns about the security of patient data in the NHS since the UK government awarded US IT group Palantir – backed by Donald Trump-backing billionaire Peter Thiel – a contract to create a federated data platform (FDP) designed to bring together and manage existing NHS data into a single framework.
Opposition parties and some backbench MPs in the governing Labour party have been questioning the procurement process behind the deals, claiming that attempts to scrutinise them are being blocked by the government, and are urging a pause to all ongoing contracts with the company until there has been a full investigation.
