** To support the joint statement, sign your name at the bottom on this page **

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. 

The 180+ individuals in support of this statement are:  

David Adams, University of Birmingham
Rob Aldridge, University College London
Naomi Allen, UK Biobank
Ofran Almossawi, GOS UCL Institute of Child Health
Annie Anderson, University of Dundee
Theo Arvanitis, University of Warwick
Paul Aylin, Imperial College London
Kenneth Baillie, University of Edinburgh
Konstantinos Balaskas, Moorfields Eye Hospital NHS Foundation Trust
Amitava Banerjee, University College London
Natalie Banner, Understanding Patient Data
Simon Ball, University Hospitals Birmingham NHS Foundation Trust
Samira Bell, University of Dundee
Ipek Birced, University of Dundee
Nicola Blackwood, Genomics England
Matt Boazman, Birmingham Women’s and Children’s Hospital
Angela Boon, Camden and Islington NHS Foundation Trust
Christopher Butler, Nuffield Department of Primary Care Health Sciences
Adam Butterworth, University of Cambridge
Caroline Cake, Health Data Research UK
Mark Caulfield, Genomics England
Francesca Cavallaro, University College London
Paul Charlton, Patient
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
Angela Coulter, Public Advisory Board, Health Data Research UK
Scott Cunningham, University of Dundee
Sandra Currie, Kidney Research UK
John Danesh, University of Cambridge
Adem Dawed, University of Dundee
Chris Day, University of Newcastle
Charlie Davie, DATA-CAN Health Data Research Hub for Cancer
Melanie Davies, University of Leicester
John Deanfield, NICOR
Bianca De Stavola, University College London
Emanuele Di Angelantonio, University of Cambridge
Chris Dibben, University of Edinburgh
Peter Diggle, University of Lancaster
Aiden Doherty, University of Oxford
Alexander Doney, University of Dundee
Katherine Dunne, Medical Research Council
Lara Edwards, Health Data Research UK
Paul Elliott, Imperial College London
Hilary Evans, Alzheimer’s Research UK
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, University College London
Carole Fogg, University of Southampton
David Ford, Swansea University
Elizabeth Ford, Brighton and Sussex Medical School
Matthew Franklin, University of Sheffield
Claudio Fronterre, University of Lancaster
Moritz Gerstung, European Molecular Biology Laboratory
Ruth Gilbert, University College London
Arturo Gonzalez-Izquierdo, University College London
Anthony Gordon, Imperial College London
Ben Gordon, Health Data Research UK
Emma Gordon, Administrative Data Research UK
Laura Gray, University of Leicester
Lucy Griffiths, Swansea University
Ian Hall, Nottingham University
Pia Hardelid, University College London
David Harrison, Intensive Care National Audit & Research Centre (ICNARC)
Ewan Harrison, Wellcome Sanger Institute
Katie Harron, University College London
Geoff Hall, University of Leeds
Tim Hubbard, Kings College London
Chris Holmes, University of Oxford
Peter Horby, Co-lead RECOVERY trial
Matthew Hurles, Wellcome Sanger Institute
Michael Inouye, University of Cambridge
John Iredale, University of Bristol
Matthew Jay, University College London
Emily Jefferson, University of Dundee
David Jenkinson, The Brain Tumour Charity
Tim Jones, University Hospitals Birmingham
Monica Jones, University of Leeds
Anne Johnson, Academy of Medical Sciences and UCL
Jenn Johnson, University of Dundee
Olatunji Johnson, Lancaster University
Jenny Johnston, University of Dundee
Pearse Keane, University College London
Palwasha Khan, London School of Hygiene & Tropical Medicine
Kamlesh Khunti, University of Leicester
Jo Knight, Lancaster University
Rachel Knowles, Medical Research Council
Susan Krueger, University of Dundee
Martin Landray, University of Oxford, Co-lead RECOVERY trial
Sinead Langan, London School of Hygiene and Tropical Medicine
Wen Hwa Lee, Action Against Age-related Macular Degeneration
Kate Lewis, University College London
Michael Lewis, University of Birmingham
John Maingay, British Heart Foundation
Alex Markham, University of Leeds
Sarah Markham, King’s College London
Sara Marshall, Wellcome
Charis Marwick, University of Dundee
Erum Masood, University of Dundee
Sarah McDonald, Myeloma UK
Iain McInnes, University of Glasgow
Andrew McIntosh, University of Edinburgh
Susan Mollan, University Hospitals Birmingham
Jonathan Montgomery, University College London
Andrew Morris, Health Data Research UK
Eva Morris, Nuffield Department of Population Health
Paul Moss, University of Birmingham
Craig Mowat, University of Dundee
Mome Mukherjee, University of Edinburgh
Shahzad Mumtaz, University of Dundee
Neal Navani, University College London Hospital
Lucy Neville Rolfe, Health Data Research UK
Danielle Newby, University of Oxford
Steven Oliver, Hull York Medical School
James O’Shaughnessy, House of Lords
Colin Palmer, University of Dundee
Alison Park, Economic and Social Research Council (ESRC)
Helen Parkinson, European Bioinformatics Institute
Jay Patel, Conidia Biosciences
Brian Peacock University of Dundee
Ewan Pearson, University of Dundee
Rachel Pearson, University College London
Jill Pell, University of Glasgow
Maria Peppa, University College London
Nicola Perrin, Association of Medical Research Charities
Munir Pirmohamed, University of Liverpool
Cecilia Poli, NIHR-BHF Cardiovascular Partnership
Neil Postlethwaite, Health Data Research UK
Paola Quattroni, Health Data Research UK
Philip Quinlan, University of Nottingham
Rosalind Raine, University College London
Parminder Reel, University of Dundee
Smarti Reel, University of Dundee
Caroline Relton, University of Bristol
Sylvia Richardson, Royal Statistical Society
Arthur Roach, Parkinson’s UK
David Robertson, University of Edinburgh
Ian Rowe, University of Leeds
James Rudd, University of Cambridge and Addenbrooke’s Hospital
Neil Sebire, Great Ormond Street Hospital
Calum Semple, University of Liverpool
David Seymour, Health Data Research UK
Jackie Shears, Healthy minds, Healthy Business
Aziz Sheikh, BREATHE Health Data Research Hub for Respiratory Health
Moneeza Siddiqui, University of Dundee
Tamir Sirkis, University of Exeter
Tim Skelton, University Hospitals of Leicester NHS Trust (NIHR Infrastructure)
Ashleigh Smith, Health Data Research UK
Blair Smith, University of Dundee
Stephen Smith, Clarivate
Graham Spittle, Health Data Research UK
Louise Stanley, Birmingham Health Partners
Bob Steele, University of Dundee
Jonathan Sterne, University of Bristol
Adam Steventon, the Health Foundation
Tracey Stewart, University of Dundee
Rona Strawbridge, University of Glasgow
Helen Strongman, London School of Hygiene & Tropical Medicine
Cathie Sudlow, BHF Data Science Centre, Health Data Research UK
Frank Sullivan, University of St Andrews Medical School
Matt Sydes, MRC Clinical Trials Unit at University College London
Janet Thornton, European Bioinformatics Institute
Steve Thornton, Queen Mary University of London
Martin Tobin, University of Leicester
Chris Tomlinson, University College London
Fatemeh Torabi, Swansea University
Alice Turnbull, Health Data Research UK
Bridget Turner, Diabetes UK
Rakesh Uppal, Barts Life Sciences
Janet Valentine, Clinical Practice Research Datalink (CRPD)
Susheel Varma, Health Data Research UK
Maximiliane Verfuerden, UCL Great Ormond Street Institute of Child Health
Ian Walker, Cancer Research UK
Richard Walls, University of Dundee
Mark Walport, Imperial College Academic Health Sciences Centre
Vanexia Walker, University of Bristol
Siegfried Wagner, University College London
Louise Wain, University of Leicester
Huan Wang, University of Dundee
Charles Warlow, University of Edinburgh
Fiona Watt, Medical Research Council
Johnathan Weber, Imperial College Academic Health Science Centre (AHSC)
Tim Wilkinson, University of Edinburgh
Bryan Williams, University College London
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
Tom Yates, Imperial College London

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