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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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