Establishing a central system allowing access to GP data for research is England’s ‘highest data priority’, a major Government-commissioned review has found.
The Sudlow Review, published on Friday (8 November), set out the current ‘barriers and inefficiencies’ to health data sharing, and recommended a series of actions to enable health research which could improve the nation’s ‘health and wellbeing’.
Among her five recommendations, Professor Cathie Sudlow called on the Department of Health and Social Care (DHSC) and NHS England to establish a ‘national health data service’ for England, whose ‘key priority’ would be to establish a central general practice dataset by early 2026.
In response to the report, the health leaders who commissioned the review – including England’s chief medical officer Professor Sir Chris Whitty and NHS England’s director of transformation Dr Vin Diwakar – committed to developing a plan for a ‘national health data research service’.
The review also urged the Government to develop a strategy for ‘ongoing engagement’ on data sharing with patients and health professionals, with a strong emphasis on GPs, whose views are ‘crucial’ given their role as data controllers.
Its five key recommendations were for:
- Major public bodies to agree a coordinated joint strategy to make England’s health data a ‘critical national infrastructure’;
- The Government and others to establish a ‘national health data service’ for England;
- DSHC to commission a strategy to engage patients, health professionals and politicians on data sharing for research;
- Health departments in all four nations to set a UK-wide approach to data access processes;
- Four nations to develop a UK-wide system for accreditation of secure data environments (SDEs) which hold data from the health system.
Professor Sudlow argued that GP data are ‘some of the most important for improving healthcare’, but that ‘some’ GPs are ‘more circumspect than patients’ about the use of health data for research.
She cited concern among GPs about ‘inadvertently breaching’ data privacy laws, or about any data collected centrally being ‘used for performance management’.
As part of a strategy to get GPs and their staff on board, she recommended that health officials identify ‘positive benefits’ such as financial incentives, and provide ‘secure frameworks and processes for data sharing that minimise actual and perceived risks’.
The review also proposed a ‘single, centralised’ opt-out system for patients in England to replace the ‘currently confusing and cumbersome’ type 1 and type 2 opt-out systems.
However, Professor Sudlow stressed to the Government that this ‘must not impose a burden’ on ‘busy GPs’.
On the national GP dataset, she said in the review’s concluding remarks: ‘With respect to data types and sources, the highest priority is to put in place a national system that enables secure access to comprehensive, coded general practice data for the whole population, linkable to other data sources and capable of supporting the full range of beneficial use cases.’
This was raised by ‘multiple stakeholders’ as the ‘highest priority, unfulfilled health data need’, and the review stated that ‘none of the current data platforms’ fulfil all the requirements of a ‘national solution for primary care data’, despite major developments since the pandemic.
Professor Sudlow told the Government that engaging with GPs on this is ‘crucial’ given that ‘some have reservations’ about how the data they collect is used.
‘Success will rely on engaging GPs throughout, avoiding imposing any burden on already overstretched primary care services, and providing positive incentives to ensure the support of the profession,’ she argued.
Implementing this central database will require involvement from the profession – the BMA and the RCGP – as well as DHSC, NHSE and the main GP IT system suppliers, the review said.
Since there is an ‘urgent need for progress’ towards this goal, the review called for a ‘rapid’ interim solution whereby flexibilities in data sharing used during the pandemic are made permanent for other non-Covid health conditions, with a goal to implement this within the first few months of 2025.
Meanwhile, a ‘definitive solution’ for a central GP database which is accessible for research would implemented during the early months of 2026 (see box).
Recommendations for a national system for GP data
Rapid interim solution
Two recommended actions to enable rapid progress:
- Rapid implementation of Secretary of State directions that enable the NHS England General Practice Data for Pandemic Planning and Research data to be used for research and analysis of non-Covid 19 health conditions.
- Accelerate the planned extension of the Secretary of State direction for research and analysis using the OpenSAFELY platform within the TPP and EMIS primary care computer system suppliers’ data centres to cover non-Covid-19-related health conditions.
Proposed options to be considered for a ‘definitive solution’
- Comprehensive, population-wide, structured, coded data extracted from general practice computer systems into NHSE systems.
- Expand the Clinical Practice Research Datalink (CPRD).
- Expand the RCGP Research and Surveillance Centre (RSC).
- Implement OpenSAFELY capabilities within the NHS secure data environment.
- Explore data within general practice computer systems via OpenSAFELY and extract subsets of data to NHSE (or other secure settings) as needed.
Source: Sudlow Review
This independent review into health data and research was commissioned by NHS England, the chief medical officer, and the UK National Statistician, and it involved consultation with hundreds of stakeholders.
Responding to the review’s publication, Professor Sudlow said: ‘We are simply not maximising the benefits to society from the rich abundance of health data in the UK.
‘For example, research about health conditions affecting millions of people across the UK is far too often prevented or delayed by the complexity of our systems for managing and accessing data.’
She said that her review ‘shows that getting this right holds a great prize’ for ‘an effective healthcare system for everyone’.
The DHSC said it welcomes the Sudlow Review and will be taking full consideration of the recommendations over the coming months.
DHSC’s minister responsible for life sciences Baroness Gillian Merron highlighted that the Government’s upcoming 10-year plan for the NHS will include a ‘shift’ from analogue to digital by ‘accelerating research through secure access to data’.
‘I’d like to thank Professor Sudlow and the team for their work on this review, which underlines the enormous potential we can unlock in our health service, alongside recommendations on how this could be done,’ she added.
Professor Whitty said the report will help the NHS to ‘use data more effectively for current and future patients, whilst maintaining patient confidentiality’.
‘Using data from multiple sources is essential to improve current patient care, make the NHS more effective and improve outcomes for future patients through research,’ he said.
Dr Diwakar said the review showed that the NHS ‘must go further and faster in building and reforming national health data research’.
The NHSE director added: ‘Working with the government and our partners, the NHS can make the UK a global leader in life sciences – delivering faster access to better treatment, and boosting the economy.
‘But we know we must always maintain the confidence of the public, which is why we are running a huge engagement campaign to let people have their say on using data in ways that are responsible, safe and secure, and in ways that improve the nation’s health.’
Under new legislation introduced to Parliament last month, all NHS IT suppliers will be required to meet ‘common standards’ which enable patient data sharing across GP practices and trusts.
Health secretary Wes Streeting has also recently emphasised his goal to create a ‘single patient record’ which brings together data from across all NHS organisations.
A version of this story was first published on our sister title Pulse.
