UK Biobank to get access to GP patient data for research

The government will grant approval for UK Biobank researchers to access coded GP patient data for research purposes.

UK Biobank’s 500,000 volunteers have consented to make their health data available, to researchers around the world, but until now there has been no central way to access primary care data in England, unlike in Scotland and Wales.

Having GP data for all of UK Biobank participants is expected to double the number of recorded cases of some health conditions commonly handled by GPs, including arthritis, dementia, depression, eczema, heart failure and impaired hearing or vision.

Professor Sir Rory Collins, principal investigator and chief executive at UK Biobank, said: “Access to our participants’ coded GP patient data will be a game changer for research into some of the most common and debilitating diseases.

“There’s no doubt this will revolutionise the power of UK Biobank.

“Combined with the existing wealth of genetic, lifestyle, imaging and environmental information on our half a million volunteers, researchers will be able to study diseases like dementia, depression, joint pain, and asthma in much greater depth, and earlier in their development when treatment is typically more effective.”

Data will only be provided to UK Biobank once a formal data sharing agreement is in place, and it will not be released to researchers until the Department of Health and Social Care has approved the security of UK Biobank’s data sharing platform.

Notes from participants’ GP appointments or letters will remain confidential and personal identifiers, such as names, addresses and NHS numbers, will be removed.

NHS England will now be responsible and legally liable for the data, removing the burden of responsibility and liability from GPs.

Clare Gerada, former chair of the Royal College of General Practitioners, said: “NHS England taking on the legal responsibility is very significant and GPs like me should now be really excited as finally researchers can properly study the diseases affecting the patients who walk through our doors every day.”

Half a million participants, now with an average age of 72, have been sharing their health data with UK Biobank for more than 15 years.

This includes data on their lifestyle and medical history, physical health, genetics, levels of proteins and metabolites in their blood, coupled with information from their NHS health records to find out what happens to their health over many years.

Professor Patrick Chinnery, executive chair of the Medical Research Council, said: “Linking volunteers’ GP medical records to UK Biobank fills a long-standing gap in the dataset, which promises to unlock transformative research that will benefit NHS patients and the public, accelerate global discoveries, and position the UK as a world leader in life sciences.”

UK Biobank data is used by researchers across the world, from academic, commercial, government and charitable settings, for scientific discoveries to improve human health, such as the development of an AI method to predict the early onset of 38 age-related diseases.

However, its security has at times come under scrutiny, with UK Biobank denying reports that it shared sensitive health data with insurance companies and that a right wing group misused data for ‘race science’ research.

GP data will also be shared with Genomics England and Our Future Health where participants in these trials have given consent.