GP health data are crucial for the planning and provision of health services
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
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
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