UK Biobank has confirmed to Medscape News UK that NHS England is conducting audits on its systems. The checks could pave the way for anonymised primary care data from GPs to become available via the biomedical database.

The audits include a review of the consent process for participants and whether access to GP data covers that consent. A separate cybersecurity audit of UK Biobank’s systems, focused on accessing GP patient data via the platform, is also underway. 

UK Biobank expects these checks to be completed later this month.

Expanded Research Capabilities

“Adding de-identified primary care data to UK Biobank will transform the research potential of our database overnight,” said Professor Sir Rory Collins, principal investigator and chief executive of UK Biobank.

“Approved researchers will have an unprecedented toolbox to drive diagnostics and treatments for conditions such as diabetes, dementia, and mental ill health, which are largely managed in primary care,” he explained to Medscape News UK. “Researchers have been clamouring for this data, which will allow them to investigate the problems we all go to our GP for.”

The addition of coded GP data on diagnoses, prescriptions, and referrals to UK Biobank would “roughly double the cases of depression and dementia that can be identified,” Collins said, “as well as allowing detection of less severe cases at an earlier stage.” This would enable research into “the full spectrum of disease severity, bringing new diagnostic tools and treatments we need closer,” he added.

Heart Study Highlights Data Value

A recent study led by Oxford Population Health demonstrated the value of primary care data in improving the diagnosis of a common heart condition. 

Researchers analysed data from 230,060 UK Biobank participants who had consented to share both their GP records and any relevant hospital admission data. They found 28% more cases of atrial fibrillation in primary care records than in secondary care data alone. 

Primary care records also captured evidence of atrial fibrillation an average of 1.3 years earlier.

Jemma Hopewell, professor of precision medicine and epidemiology at Oxford Population Health and senior author of the study, said, “Our findings show that data from across healthcare settings is extremely powerful for understanding patient profiles, management, and consequences of atrial fibrillation. 

“These insights can then be used to develop new strategies that will allow us to improve patient outcomes.”

Secure Access via Research Analysis Platform

Last year, UK Biobank changed how its data are accessed.

All data are now available only via the cloud-based UK Biobank Research Analysis Platform (UKB-RAP). This shift aims to improve the security of confidential data. It could also prepare for being able to add coded GP data at some point.

Previously, researchers could download data locally. The change prompted some objections to the RAP-only system. These included potentially prohibitive costs and technical limitations for certain types of research, such as imaging studies. 

The transition prompted imaging researchers from around the world to write a statement of concern to UK Biobank.

In response, UK Biobank told Medscape News UK, “Thanks to Wellcome, we are offering financial support to researchers who have high computing costs. There is a very small minority who cannot currently conduct their research on the platform, and they have been able to apply for a temporary one-year exemption.” 

UK Biobank also stressed that the exemptions will not apply to GP data as this will only be accessible via UKB-RAP.

Mixed Reactions From Imaging Researchers

When Medscape News UK asked members of the imaging researcher community whether their concerns had been eased, the response was mixed.

William Cawthorn, a senior lecturer and associate professor at the Centre for Cardiovascular Science at University of Edinburgh, was optimistic. 

“My experience is that UK Biobank have now recognised the imaging challenges and the need to offer exemptions for imaging researchers to download the imaging data, free of charge. I requested an exemption in February, and this was approved quite quickly. This certainly has addressed my concerns about the RAP transition,” he said.

Others voiced frustration.

“The impact of this change has been a disaster,” explained Dr Jorge Cardoso, a reader in artificial medical intelligence at King’s College London. 

“Our research using UK Biobank has completely halted. Previously, it was our primary dataset, but RAP simply does not support the computational requirements needed for AI imaging research. As a result, all of my projects and students have had to abandon using this resource,” he said.

Although UK Biobank have advised the community they will eventually upgrade RAP to accommodate imaging data and AI research, Cardoso added that the current 1-year temporary exemption isn’t suitable for everyone.

“The uncertainty around if and how RAP will eventually support our work makes it impossible to commit to new projects using the dataset,” he said. “Few researchers are willing to risk their research on what amounts to a temporary solution with no clear path forward.” The current situation is “deeply unfortunate,” he said. 

Cardoso warned that the uncertainty surrounding future upgrades makes it hard to commit to new projects.

“UK Biobank has transformed from an invaluable research resource into an expensive asset that’s now largely inaccessible for advanced computational research,” he said. “The UK has invested significantly in this dataset, but the current access model prevents it from being explored to its full potential, which is a tremendous loss for the research community.”

Concerns Over Reputation and Access

Some researchers who spoke to Medscape News UK believe the access changes have affected UK Biobank’s reputation in the research world. One neuroscience researcher in Australia said that requiring RAP had “stifled the progress for a large fraction of research involving neuroimaging data — a core tool for thousands of neuroscientists investigating the human brain.”

In response to concerns raised by the imaging research community, UK Biobank said it is “continuing to develop the platform to ensure it can be as useful as possible to the widest group of researchers.” It said it is “listening closely” to the imaging researcher community and is “working with them to find the best solutions for their research.”

Julie Penfold is a freelance journalist specialising in healthcare and medical content. Her work regularly appears in titles such as Medscape, Doctors.net.uk, and Hospital Healthcare Europe.