UK Biobank has written to all GP practices, with the support of the RCGP and NHS England, asking them to release patient data via their IT systems.
This would allow the data from 503,000 consenting adults to be shared and used for ‘all types of health-related research’.
NHSE’s national medical director Professor Sir Stephen Powis and RCGP chair Professor Kamila Hawthorne are co-signatories to the letter, which was sent to practices last night.
The body of the letter stated that the request to release data is also ‘endorsed’ by the BMA.
UK Biobank confirmed to Pulse that this was an error and chair of the GP Committee in England Dr Katie Bramall-Stainer highlighted that she did not give permission to support the letter.
‘Sadly, this now affects my trust in how you’ll gain patient consent for their health data if you ignore mine so freely,’ she wrote on X (Twitter).
Dr Bramall-Stainer also said that adhering to this request to share data is ‘not contractual’
UK Biobank, which receives some of its funding from the UK Government and the National Institute for Health and Care Research (NIHR), is a ‘large-scale biomedical database’ containing genetic and health information from half a million UK participants.
Their data is anonymised and made ‘widely accessible’ for health-related and scientific research.
The letter last night said that ‘special regulations’ during the pandemic allowed the transfer of primary care records from GPs to UKBiobank for research, which ‘resulted in 200 peer-reviewed studies’ on Covid-19.
It said: ‘However, since the extraordinary provisions for COVID-19 ended, each GP practice must now take action as the ‘data controller’ to approve release of the coded primary care data to UK Biobank.
‘Releasing these data to UK Biobank will allow consenting patients to participate in this important research.’
This request applies to practices using EMIS or TPP systems, and requires either GPs or their practice manager to ‘simply’ tick a box on the system.
The letter also sought to mitigate GP concerns about sharing patients’ data, saying the Information Commissioner has confirmed that the existing written consent obtained from patients ‘is compliant with current data protection legislation’.
It added: ‘UK Biobank has already been making de-identified NHS health outcome data (e.g. deaths, cancers, and hospitalisations) available to approved researchers for the past 10 years.
‘The same strict data protection and information governance processes would be applied for access to the primary care data, which would be restricted to coded information.’
In June, NHSE indicated that it could become a co-data controller of patient records in order to help relieve individual GP liability.
Data from the UK Biobank was used in a recent study which found that raised blood glucose is associated with greater risk of cardiovascular disease (CVD) even when below the threshold for diagnosing diabetes.