The NHS should move away from its current model where GPs are the sole controllers of patient data, an influential non-profit organisation has argued.
A report by the Tony Blair Institute (TBI) has looked at how NHS data could be shared ‘safely and securely’ with researchers to ‘accelerate healthcare discoveries’.
It argued that 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.
According to the report, the project has the potential to generate £2bn which would be reinvested in the NHS, as well as patient benefits from medical innovation and better care.
The report said: ‘This shift will involve prioritising legislative changes to streamline the process of requesting access to data for research purposes (data-access requests), while ensuring robust safeguards for patient confidentiality.
‘The UK’s current approach to access to health data is piecemeal, holding us back from realising their significant potential to accelerate medical discoveries.’
The National Data Trust would operate as ‘an independent commercial entity’ with majority ownership by the Government and the NHS, and a proposed public-private ownership ratio of 70:30.
However, DAUK spokesperson Dr Steve Taylor said that creating a national body to act as data controller would ‘take away’ the premise of the information being collected only for patient care.
He said: ‘Patient data is largely held and collected by GP practices for the use of GPs in patient care. It was collected for the specific purpose of supporting an individual patient and the healthcare professionals supporting them.
‘The collective data is very useful for researchers in population health, but is also extremely valuable for many other uses.
‘Any change in the use of data has to be considered based on public consultation, clear guidelines about use, and should not be sold or managed without the permission of individuals.
‘Moving to a national body as data controller takes away the original premise of the information collected as just being for individual patient care. This is a big change and should not be done lightly.’
Dr Neil Bhatia, a GP and records access lead at his practice in Hampshire, said that while patients ‘trust their GP’ with their data, they are unlikely to trust a different organisation.
He said: ‘This has been proposed numerous times. Some GPs have also proposed relinquishing data controllership, because of the burden of dealing with data subject access requests.
‘Patients trust their GP, they don’t really trust the Government, especially with their medical information.
‘I suspect patients and the public would be very unhappy if their GP lost control over their sensitive information.’
The TBI report also pointed out that ‘a lack of public trust’ has previously stopped similar projects, citing the care.data GP-record sharing scheme, suspended in 2016 after more than a million patients opted out amid concerns about how their data would be used and shared with third parties, and the General Practice Data for Planning and Research programme, which faced ‘significant’ backlash in 2021.
It also criticised the Government’s approach to funding health-data initiatives, which is characterised by ‘small, short-term grants’ from multiple sources and ‘frequent reinvention’ of programmes.
It added: ‘[It is] in part as a response to a political desire to announce new initiatives. This leads to a fragmented landscape of competing programmes that rarely achieve commercial viability or scalability, in contrast with other leading countries in this space.’
Former Government chief scientific adviser Sir Patrick Vallance, who wrote the foreword for the report, said: ‘Giving access to trusted researchers would enhance the discovery and implementation of better health care and a more sustainable model of delivery. This is essential if we are to tackle the complex challenges facing our society and deliver better outcomes for citizens.
‘This proposal also puts public trust and benefit at its heart, with appropriate safeguards in place to ensure the public have control over their data and how it is used, and that commercial interests never take precedence over the public good.’
In September, NHS England announced £2m of funding for an engagement campaign to gather views from patients on how data in their GP record is used.
This includes public views on NHS data projects such as the Federated Data Platform (FDP), which has been the subject of controversy.
The health secretary recently suggested that GP data could be included in the FDP, despite repeated assurances from NHS England that the platform will not include GP data at a national level.
The recommendation in full
4. Amending legislation on data controllership within the NHS to move away from the current model, where general practitioners (GPs) are the sole controllers of a lot of patient data. This shift will involve prioritising legislative changes to streamline the process of requesting access to data for research purposes (data-access requests), while ensuring robust safeguards for patient confidentiality.
Source: TBI
A version of this story was first published on our sister title Pulse.
