GP practices should release patient data, says UK BioBank

UK Biobank has written to all GP practices in England requesting the release of primary care data for consented participants.

The letter was endorsed by NHS England and by the Royal College of General Practitioners. The letter as originally circulated also claimed endorsement by the British Medical Association (BMA), but the BMA stated that this was inaccurate.

A correction was subsequently issued by UK Biobank, which said: 'A first publication of the letter mistakenly referred to the BMA as endorsing the request. The error was corrected immediately. We hope that the BMA will be able to support the process explicitly in the future.'

UK Biobank currently has access to its participants' hospital records, but chief executive, Professor Sir Rory Collins told the Times: 'The GP data is probably the most comprehensive information about a person in terms of their health. Everything is there so you pick up health conditions that you don't pick up through death or cancer or hospitalisation.'

UK Biobank has around 500,000 participants, who have consented for their deidentified medical data to be used for research purposes. However, UK Biobank has been unable to access primary care data, as it is not held centrally by the NHS.

Rather, GPs are the legal 'data controllers' for their registered patients, meaning that they are liable for ownership and are legally responsible for how patient data is processed and exchanged. While around a quarter of GPs are sharing data with UK Biobank voluntarily, many others say they are concerned about the sensitivity of the data.

The letter from UK Biobank sought to assuage these concerns, explaining that the Information Commissioner has confirmed that the explicit written consent provided by UK Biobank volunteers 'is compliant with current data protection legislation'.

An alternative approach to remove GP liability would be to make NHS England co-data controller. This idea was previously raised by NHS England's transformation director, Dr Tim Ferris, who said that GPs' data controller status is a 'significant challenge that needs to be overcome'.

While provisions were made during the pandemic to allow for the transfer of primary care data to UK Biobank for research, these arrangements have since ended. While the arrangements were in place, they 'resulted in 200 peer-reviewed studies' on COVID-19.

Professor Naomi Allen, UK Biobank's chief scientist, said: 'There are so many health conditions that are primarily managed by the GP that cause huge disability, like diabetes, arthritis, pain, migraines, asthma. All of these things we haven't been able to do much research on in terms of developing new treatments because we've never been able to access the primary care data.'