NHS Digital GP Dataset – Joint Statement from the Medical and Social Research Community
GP health data are crucial for the planning and provision of health services and to enable research discoveries that save and improve people’s lives
Combatting the COVID-19 pandemic has depended upon the ability to collect, link, access and use health data for research. It has allowed the NHS to identify and protect millions of people at high risk from COVID-19, to deliver and monitor the safety and effectiveness of the COVID-19 vaccination programme, and to identify life-saving treatments for COVID-19, including dexamethasone. These benefits must not stop with COVID-19. They must also extend to people living with other conditions such as mental illness, cancer, heart disease and diabetes.
As representatives of the UK’s medical and social research community, we support the goals of NHS Digital’s GP Data for Planning and Research (GPDPR) – an improved collection of primary care data from general practice systems. NHS Digital’s plans for making health data available for research are not new. NHS Digital has been collecting health data and enabling access by approved organisations for healthcare planning and research for public benefit for many years. What is new is the addition of GP data, which – as has been seen with COVID-19 – can support an even wider range of research to benefit patients.
We are therefore concerned to see the recent portrayal of this as a ‘data grab’. We believe that the trustworthy use of patient data for research that is in the public interest will enable better care, better treatments and better outcomes for the citizens of the UK.
Ensuring the confidence of GPs and patients is crucial and so we are pleased to see there will be more time taken to build transparency, clear communication and ongoing engagement, particularly around how the data will be accessed and commercial use. Whilst undertaking research involving health and social care data it is essential to demonstrate trustworthiness. The UK has expertise in applying safeguards in a scalable and verifiable way. This is exemplified through the UK Health Data Research Alliance’s leadership on Trusted Research Environments (TREs) centred on the “five safes framework”, data use registers, and meaningful public and patient engagement and involvement.
For those who do not wish their data to be included, the National Data Opt-out, which was developed with much consultation across the NHS over several years, provides an important way for people to opt-out of the wider use of their data across the whole NHS system, at any time. However, we hope that with better information on both the benefits and the safeguards of this improved approach, people will choose not to opt-out. It is vital that healthcare planning and research includes and represents all people so that we find treatments, improve care, and deliver positive outcomes for everyone.
Individuals in support of this statement are:
A
- David Adams, University of Birmingham
- Rob Aldridge, UCL
- Annie Anderson, University of Dundee
- Theo Arvantis, University of Warwick
B
- Kenneth Baillie, University of Edinburgh
- Amitava Banerjee, UCL
- Natalie Banner, Understanding Patient Data
- Simon Ball, University Hospitals Birmingham NHS Foundation Trust
- Samira Bell, University of Dundee
- Ipek Birced, University of Dundee
- Matt Boazman, Birmingham Women’s and Children’s Hospital
- Christopher Butler, Nuffield Department of Primary Care Health Sciences
- Adam Butterworth, University of Cambridge
C
- Caroline Cake, Health Data Research UK
- Mark Caulfield, Genomics England
- Afzal Chaudhry, University of Cambridge
- Patrick Chinnery, University of Cambridge
- Adrian Clatworthy, University of Dundee
- John Cleland, University of Glasgow
- Christian Cole, University of Dundee
- Rory Collins, UK Biobank
- Scott Cunningham, University of Dundee
- Sandra Currie, Kidney Research UK
D
- John Danesh, University of Cambridge
- Adem Dawed, University of Dundee
- Charlie Davie, DATA-CAN Health Data Research Hub for Cancer
- Melanie Davies, University of Leicester
- Emanuele Di Angelantonio, University of Cambridge
- Peter Diggle, University of Lancaster
- Chris Day, University of Newcastle
- Alexander Doney, University of Dundee
E
- Paul Elliott, Imperial College London
- Hilary Evans, Alzheimer’s Research UK
F
- Hilary Fanning, University Hospitals Birmingham
- Andrew Farmer, Nuffield Department of Primary Care Health Sciences
- Sean Faughey, University of Dundee
- José-Luis Fernández, London School of Economics
- Nigel Field, UCL Institute of Global Health
- Natalie Fitzpatrick, UCL
- David Ford, Swansea University
- Claudio Fronterre, University of Lancaster
G
- Moritz Gerstung, European Molecular Biology Laboratory
- Anthony Gordon, Imperial College London
- Emma Gordon, Administrative Data Research UK
- Laura Gray, University of Leicester
H
- Ian Hall, Nottingham University
- Tim Hubbard, Kings College London
- Chris Holmes, University of Oxford
- Matthew Hurles, Wellcome Sanger Institute
I
- Michael Inouye, University of Cambridge
- John Iredale, University of Bristol
J
- Emily Jefferson, University of Dundee
- David Jenkinson, The Brain Tumour Charity
- Tim Jones, University Hospitals Birmingham
- Anne Johnson, Academy of Medical Sciences and UCL
- Jenn Johnson, University of Dundee
- Jenny Johnston, University of Dundee
K
- Kamlesh Khunti, University of Leicester
- Jo Knight, Lancaster University
- Susan Krueger, University of Dundee
L
- Martin Landray, University of Oxford
- Michael Lewis, University of Birmingham
M
- John Maingay, British Heart Foundation
- Sara Marshall, Wellcome
- Charis Marwick, University of Dundee
- Erum Masood, University of Dundee
- Sarah McDonald, Myeloma UK
- Iain McInnes, University of Glasgow
- Andrew Morris, Health Data Research UK
- Eva Morris, Nuffield Department of Population Health
- Craig Mowat, University of Dundee
- Shahzad Mumtaz, University of Dundee
N
- Lucy Neville Rolfe, Health Data Research UK
O
- James O’Shaughnessy, House of Lords
P
- Colin Palmer, University of Dundee
- Helen Parkinson, European Bioinformatics Institute
- Brian Peacock University of Dundee
- Ewan Pearson, University of Dundee
- Jill Pell, University of Glasgow
- Nicola Perrin, Association of Medical Research Charities
- Munir Pirmohamed, University of Liverpool
R
- Rosalind Raine, University College London
- Parminder Reel, University of Dundee
- Smarti Reel, University of Dundee
- Caroline Relton, University of Bristol
- Arthur Roach, Parkinson’s UK
- David Robertson, University of Edinburgh
- James Rudd, University of Cambridge and Addenbrooke’s Hospital
S
- Neil Sebire, Great Ormond Street Hospital
- Calum Semple, University of Liverpool
- David Seymour, Health Data Research UK
- Aziz Sheikh, BREATHE Health Data Research Hub for Respiratory Health
- Moneeza Siddiqui, University of Dundee
- Tim Skelton, University Hospitals of Leicester NHS Trust (NIHR Infrastructure)
- Blair Smith, University of Dundee
- Rona Strawbridge, University of Glasgow
- Bob Steele, University of Dundee
- Adam Steventon, the Health Foundation
- Tracey Stewart, University of Dundee
- Cathie Sudlow, BHF Data Science Centre, Health Data Research UK
T
- Janet Thornton, European Bioinformatics Institute
- Steve Thornton, Queen Mary University of London
- Martin Tobin, University of Leicester
- Bridget Turner, Diabetes UK
V
- Janet Valentine, Clinical Practice Research Datalink (CRPD)
W
- Ian Walker, Cancer Research UK
- Richard Walls, University of Dundee
- Mark Walport, Imperial College Academic Health Sciences Centre
- Louise Wain, University of Leicester
- Huan Wang, University of Dundee
- Fiona Watt, Medical Research Council
- Johnathan Weber, Imperial College Academic Health Science Centre (AHSC)
- John Williams, University of Birmingham
- William Whiteley, University of Edinburgh
- Chris Wigley, Genomics England
- Angela Wood, University of Cambridge
- Louise Wood, National Institute for Health Research
