NHS pledges to ‘protect data’ as researchers in China access UK study data

16 April 2025, 18:20

Health officials have insisted they will continue to “protect NHS data” after reports of foreign researchers accessing patient information.

NHS officials said that there has to be legal approval before data is shared.

It comes as reports highlighted how Chinese research institutes have accessed data from a major UK study.

The UK Biobank study holds anonymised genetic information and health information on half a million UK volunteers.

Researchers form around the world can apply to access information from the study to help deepen medical knowledge.

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The Guardian reported that one in five successful applications for access to data have come from research teams China, which comes second to the applications made by academics working in the US.

The Medical Research Council in the UK said that Biobank’s data protection procedures are “comprehensive”.

An NHS England spokesperson said: “NHS England is working closely with the Government, the GP profession, privacy campaigners and patient representatives to allow GP data to be shared with specific approved research studies in cases where individual patient consent has been provided.

“While a legal direction would be required before any data is shared or before any agreement reached, NHS England will continue to work to ensure that appropriate measures are in place to protect NHS data.”

Studies from Chinese researchers, using data from the UK Biobank, have been published in a number of major academic journals in the last year including the British Journal of Sports Medicine; BMJ Evidence Based Medicine; Heart and Neurology. Findings have also been presented to major health conferences including the European Society of Cardiology Congress.

The studies have focused on a number of topics including sleep, dementia and heart failure.

Professor Sir Rory Collins, principal investigator and chief executive at UK Biobank, said: “Half a million people volunteered to join UK Biobank so scientists around the world can tackle conditions such as cancer and dementia.

“All our volunteers have given explicit consent for researchers to study their de-identified health data, and many have emphasised the importance of their GP data being analysed.

“We follow Government guidance on who can use UK Biobank and have robust processes for secure access to the data that are supported by the Government and our funders.”

One of the participants in the study, known as Karen, who sits on the study’s participant advisory group, added: “As a participant of UK Biobank and member of the advisory group I want our data to be available to scientists around the world.

“In order for the data to be productive we need to allow access, and I am confident that UK Biobank has robust processes in place that ensures our data is secure and appropriately used and ultimately contributing to health improvements worldwide.”

UK Biobank said that all researchers and academic institutions are “carefully vetted” before an application is approved.

So far over 15,000 peer-reviewed studies have been published using UK Biobank data in 13 years since researchers around the world have been able to access the data.

Professor Patrick Chinnery, executive chair of the Medical Research Council, said: “The findings coming out of UK Biobank-powered research are a testament to their managed access model which allows researchers internationally to accelerate the discovery of new drug targets, treatments and diagnostics.

"Their data protection procedures are comprehensive, and we have full confidence in how these are implemented."

Nicola Perrin, chief executive of Association of Medical Research Charities, who is also a board member of UK Biobank, added: "Today's press coverage makes it sound as though there will be a free-for-all on Chinese access to NHS data. This is simply not the case.

"It is important to be clear that any request for access goes through rigorous application and approval processes.

"Importantly, GP data will not be sent around the world, and data will only be accessed in UK Biobank's Research Analysis Platform - a secure data environment."

Emma Lagerstedt, from the Understanding Patient Data organisation, said: "The data contained in GP records is understandably regarded as sensitive, even when de-identified. Patients who participate in large cohort studies rightly expect their data to be safeguarded and for researchers to uphold the highest ethical standards.

"Given both the sensitivity of GP data and wider public concerns - such as those related to national security - greater transparency is essential. This includes clear, accessible information about how access to data is authorised, who has accessed it, and for what purpose.

"Demonstrating this level of transparency and trustworthiness is critical to maintaining public confidence in the use of patient data for research."

A Government spokesperson said: "Protecting national security is the foundation of everything we do. We have strict security procedures in place to ensure all sensitive UK health data information is protected.

"UK Biobank data sharing has been in use for over a decade and is always de-identified, removing the direct and indirect details that allow people to be identified.

"There is an extremely high bar and data is only shared with legitimate researchers for specific research purposes. It can only be accessed within a secure digital environment and it is not possible to download copies of the GP data outside of that secure digital space."

A spokesperson for the Information Commissioner's Office said: "People's health data is highly sensitive information.

"People are right to expect it to be handled carefully and securely, and organisations have a responsibility under the law to ensure they have robust systems in place to ensure that."