NHS England to take on responsibility for sharing patient records for research

The Government has announced plans to make it easier for patient records to be used for research, by taking on some responsibility currently held by GPs.

Health and social care secretary Wes Streeting said NHS England will take over the responsibility for sharing data where patients have consented for it to be used in studies.

Speaking at RCGP’s annual conference in Liverpool, Mr Streeting said world-leading studies like the UK Biobank, Genomics England and Our Future Health would benefit.

In return NHS England would ensure patients’ data is kept safe by requiring the highest standards of data security and patient consent processes from these studies, he told GPs.

Where patients have consented, approved researchers will be able to access coded data related to diagnoses, prescriptions and referrals, but not any confidential notes that GPs might hold. The data will be de-identified before being released. 

Mr Streeting also said the Government is working on a 10-year plan to create a single patient record, owned by the patient that can be accessed all across the health service whether in primary or secondary care.

‘We need to work together to create a single patient record, owned by the patient, shared across the system so that every part of the NHS has a full picture of the patient’, he said.

‘This applies as much to research as to care. Patients have given their consent for their data to be shared with these studies. But we still see, far too often, that this data is not shared according to patients’ wishes.

‘That’s why I am directing NHS England to take away this burden from you. Just like they did during the pandemic, if a patient explicitly consents to sharing their data with a study, NHS England will take responsibly for making this happen. In return, we will demand the highest standards of data security.’

Dr Vin Diwakar, NHS medical director for transformation, said: ‘Our ambition is to create a single patient record so that health staff can see your medical history at the touch of the button without you needing to repeat it again and again, and we want to create a future where the data that the NHS holds can be used to save lives by predicting who is most at risk of developing cancer or other diseases, and taking action to prevent them.’

Professor Sir Rory Collins, principal investigator and chief executive of UK Biobank, said the move would transform the research potential of their database overnight.

‘By adding de-identified primary care data, 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 that two decades ago half a million UK volunteers donated their biological samples and health data to UK Biobank but despite their explicit consent. Yet despite efforts over the years to engage with individual GP practices, they had not been able to access the data on a large scale and this step would ‘take the burden off busy and overworked GPs’.

Professor Andrew Morris, director of Health Data Research UK, said this would enable the trustworthy use of health data held by GPs where we know there is support.

‘Hundreds of thousands of volunteers have signed up to large clinical studies in the UK, many of them agreeing to share their health records so that more can be learned about major diseases and their treatments.

‘Starting a process to direct the sharing of this data with clinical studies that meet appropriate consent and data security processes is welcome, while taking away the burden from hard-pressed GPs who rightly take this responsibility very seriously.’

NHS data projects such as the Federated Data Platform (FDP), have been the subject of controversy among GPs and the wider NHS. 

Nicola Hamilton, head of Understanding Patient Data, said the approach was reasonable in balancing respecting participants’ wishes, the liability and risk GPs have for sharing the data, and the needs of the organisations running the studies.

‘There is an ongoing question as to how to ensure any consent given early on in a research programme remains valid and understood, particularly if there are changes to data use later on.

‘We hope that the Department of Health and Social Care and NHS England will continue to work with the GP community, participants, and the research programmes to address this and support all organisations involved.’

UK Biobank wrote to all GP practices last year, with the support of the RCGP and NHS England, asking them to release patient data via their IT systems. At the time, the BMA did not back the letter, with GPC England pointing out this was ‘not contractual’.

Today, RCGP chair Professor Kamila Hawthorne said the College had been supportive of the use of patient data for research purposes as it can have real benefits for patients and can help inform the care we provide.

‘However patient data needs to be handled very carefully. GPs are currently responsible for their patients’ data – a responsibility we take very seriously – so we need to make sure that any change to this is made with the right safeguards in place. 

‘It is absolutely crucial that we build and maintain public trust in the security of their data so that patients continue to opt in to sharing their information, and are confident it is being used securely and for the purposes they’ve agreed to. 

‘As a college, we are open to reviewing options for future models for the sharing of data for research and care planning purposes – and the profession’s involvement, alongside patients, will be integral to ensuring this is robust and secure.’

Professor Ben Goldacre, director at the Bennett Institute for Applied Data Science and professor of evidence-based Medicine at the Nuffield Dept of Primary Care Health Sciences at the University of Oxford, said: ‘It’s great to have strong support for our work making patients’ data safely accessible to analysts through the OpenSAFELY platform.

‘GP data has extraordinary breadth and depth, with vast amounts of detailed information about every one of us. That data can be used to drive research, health service improvement and innovation. But it also presents substantial risks: because it contains everyone’s most confidential medical information. Because of these privacy risks, and the scale of the data, it was never previously possible to make that data accessible for researchers at national scale.

‘With the support of NHS England, UKRI and the Wellcome Trust – and in broad collaboration across GP system suppliers and other university teams – we have been able to develop new methods for “hands-off data analysis” in the OpenSAFELY platform. These new methods have earned the trust of professional bodies, patients, citizens juries, and privacy campaigners. And so, with their support, we have been able to implement these tools in a working platform that allows researchers to run analyses – remotely and securely – against the whole population’s GP records.

‘With 171 projects from users at 22 organisations, researchers have delivered groundbreaking research on COVID. It’s hugely exciting to see NHS England and the government expanding the use of OpenSAFELY, so that the information recorded by GPs can inform wider research, planning and innovation.’

Earlier this year, the Tony Blair Institute recommended there should be a National Data Trust – a new platform for data access and clinical trials to help research – which should be set up by 2026 as a company owned by the Government and the NHS.  

To do so, the TBI proposed to amend legislation on data controllership within the NHS to move away from the current model, where GPs are the sole controllers of a large share of patient data.

Earlier this year, Pulse exclusively revealed that NHS England took down a web page which hinted at plans to use GP Connect to create a ‘central database’ of GP-held patient records.

Pulse has asked the BMA for comment.