UK BioBank will be able to access participants' GP data

UK BioBank, and potentially other organisations, will be able to access the GP data of consenting participants in England.

The news was announced, at the Royal College of General Practitioners annual conference, by the UK health secretary Wes Streeting. UK BioBank has around 500,000 participants who have consented for their medical data to be used in the study. However, GP data sharing in England has been limited, due to the way data is controlled.

'We have been trying to get our hands on primary care data for a decade now and we have got nowhere' Professor Naomi Allen, chief scientist of UK BioBank, told the Observer in July 2024. 'That data would transform our ability to uncover the causes of so many diseases and help researchers develop new treatments.'

At present, GPs in England are the 'data controllers' for their patients' data, meaning that they are legally responsible for its exchange. However, only around a fifth of participants' GPs have shared data with UK BioBank.

Many GPs have voiced concerns around data sharing with researchers due to their legal liability, workload risks, and the sensitivity of such in-depth and broad data.

'GPs in England are nervous about data-sharing', the chair of the British Medical Association (BMA) GP committee, Dr Katie Bramall-Stainer, told the Times in October 2023. 'It's been said that GPs only have to push a button. But that's a button that could cause consequences for every GP that's entirely outside their knowledge or control.'

This has led to debate, with UK BioBank claiming that the withholding of primary care data has impeded research. In September 2023, the consortium wrote to all GP practices directly to request access to the data (see BioNews 1210). The BMA, however, refused to endorse the letter, Pulse reported.

Shortly afterwards, an investigation by the Observer found that UK BioBank had shared deidentified patient data with insurance companies, despite publishing materials claiming that it would not do so (see BioNews 1216). UK BioBank stressed that the data was provided to researchers and that it had not contravened assurances given to its participants.

The changes announced by Streeting mean that NHS England, rather than GPs, will have a centralised role in sharing consenting patients' primary care data with scientific consortia. The full details of the measures, and when they come into effect, have not been announced.

Streeting mentioned the organisations Genomics England and Our Future Health alongside UK Biobank in his talk. The changes could also have a wider impact on the extent to which researchers can access GP data in England.

'We welcome today's announcement,' said Dr Richard Scott, CEO of Genomics England. 'With the right consent and ethical safeguards in place, the benefits for healthcare and research could be transformative.'