Linked electronic health records for research on a nationwide cohort of more than 54 million people in England: data resource.


Journal

BMJ (Clinical research ed.)
ISSN: 1756-1833
Titre abrégé: BMJ
Pays: England
ID NLM: 8900488

Informations de publication

Date de publication:
07 04 2021
Historique:
entrez: 8 4 2021
pubmed: 9 4 2021
medline: 16 4 2021
Statut: epublish

Résumé

To describe a novel England-wide electronic health record (EHR) resource enabling whole population research on covid-19 and cardiovascular disease while ensuring data security and privacy and maintaining public trust. Data resource comprising linked person level records from national healthcare settings for the English population, accessible within NHS Digital's new trusted research environment. EHRs from primary care, hospital episodes, death registry, covid-19 laboratory test results, and community dispensing data, with further enrichment planned from specialist intensive care, cardiovascular, and covid-19 vaccination data. 54.4 million people alive on 1 January 2020 and registered with an NHS general practitioner in England. Confirmed and suspected covid-19 diagnoses, exemplar cardiovascular conditions (incident stroke or transient ischaemic attack and incident myocardial infarction) and all cause mortality between 1 January and 31 October 2020. The linked cohort includes more than 96% of the English population. By combining person level data across national healthcare settings, data on age, sex, and ethnicity are complete for around 95% of the population. Among 53.3 million people with no previous diagnosis of stroke or transient ischaemic attack, 98 721 had a first ever incident stroke or transient ischaemic attack between 1 January and 31 October 2020, of which 30% were recorded only in primary care and 4% only in death registry records. Among 53.2 million people with no previous diagnosis of myocardial infarction, 62 966 had an incident myocardial infarction during follow-up, of which 8% were recorded only in primary care and 12% only in death registry records. A total of 959 470 people had a confirmed or suspected covid-19 diagnosis (714 162 in primary care data, 126 349 in hospital admission records, 776 503 in covid-19 laboratory test data, and 50 504 in death registry records). Although 58% of these were recorded in both primary care and covid-19 laboratory test data, 15% and 18%, respectively, were recorded in only one. This population-wide resource shows the importance of linking person level data across health settings to maximise completeness of key characteristics and to ascertain cardiovascular events and covid-19 diagnoses. Although this resource was initially established to support research on covid-19 and cardiovascular disease to benefit clinical care and public health and to inform healthcare policy, it can broaden further to enable a wide range of research.

Identifiants

pubmed: 33827854
doi: 10.1136/bmj.n826
pmc: PMC8413899
doi:

Substances chimiques

COVID-19 Vaccines 0

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

n826

Subventions

Organisme : Medical Research Council
ID : MC_UU_00011/4
Pays : United Kingdom
Organisme : Wellcome Trust
Pays : United Kingdom
Organisme : Medical Research Council
ID : MC_PC_20051
Pays : United Kingdom
Organisme : British Heart Foundation
ID : CH/17/1/32804
Pays : United Kingdom
Organisme : British Heart Foundation
ID : SP/18/3/33801
Pays : United Kingdom
Organisme : Medical Research Council
ID : MR/S004149/1
Pays : United Kingdom
Organisme : British Heart Foundation
ID : CH/12/2/29428
Pays : United Kingdom
Organisme : British Heart Foundation
ID : PG/15/33/31394
Pays : United Kingdom
Organisme : Medical Research Council
ID : MR/K014811/1
Pays : United Kingdom
Organisme : Medical Research Council
ID : MR/L003120/1
Pays : United Kingdom
Organisme : Medical Research Council
ID : MR/K006584/1
Pays : United Kingdom
Organisme : British Heart Foundation
ID : FS/18/5/33319
Pays : United Kingdom
Organisme : Medical Research Council
ID : MC_PC_20059
Pays : United Kingdom
Organisme : Medical Research Council
ID : MR/S004149/2
Pays : United Kingdom

Investigateurs

Abdel Douiri (A)
Abdul Qadr Akinoso-Imran (AQ)
Adrian Jonas (A)
Ajay Shah (A)
Alex Handy (A)
Alun Davies (A)
Amanj Kurdi (A)
Anna Hansell (A)
Annemarie Docherty (A)
Arun Pherwani (A)
Ashkan Dashtban (A)
Ben Bray (B)
Ben Cairns (B)
Ben Goldacre (B)
Ben Humberstone (B)
Bilal Mateen (B)
Brett Doble (B)
Brian Roberts (B)
Carole Morris (C)
Caroline Dale (C)
Caroline Rogers (C)
Charles Wolfe (C)
Christopher Tomlinson (C)
Claire Lawson (C)
Clea du Toit (C)
Colin Berry (C)
Craig Smith (C)
Dan O'Connell (D)
Daniel Harris (D)
David Brind (D)
David Cromwell (D)
David Hughes (D)
David Moreno Martos (DM)
Debbie Ringham (D)
Deborah Lawler (D)
Deborah Lowe (D)
Elena Nikiphorou (E)
Eloise Withnell (E)
Emanuele Di Angelantonio (E)
Eva Morris (E)
Ewan Birney (E)
Fabian Falck (F)
Fatemeh Torabi (F)
Felix Greaves (F)
Florian Falter (F)
Francesco Zaccardi (F)
Frank Kee (F)
Gareth Davies (G)
George Nicholson (G)
Gwenetta Curry (G)
Haoting Zhang (H)
Harry Hemingway (H)
Harry Wilde (H)
Hoda Abbasizanjani (H)
Honghan Wu (H)
Howard Tang (H)
Huan Wang (H)
Ify Mordi (I)
Jackie MacArthur (J)
Jane Lyons (J)
Jennifer Beveridge (J)
Jessica Barrett (J)
Jianhua Wu (J)
Johan Thygesen (J)
John Danesh (J)
John Dennis (J)
Jon Boyle (J)
Julian Halcox (J)
Kamlesh Khunti (K)
Kate Cheema (K)
Katherine Brown (K)
Ken Li (K)
Kim Kavanagh (K)
Laura North (L)
Laura Pasea (L)
Libby Ellins (L)
Livia Pierotti (L)
Lucy Wright (L)
Lydia Martin (L)
Lynn Morrice (L)
Mamas Mamas (M)
Marion Bennie (M)
Mark Barber (M)
Mary Joan Macleod (MJ)
Massimo Caputo (M)
Maya Buch (M)
Mehrdad Mizani (M)
Michalis Katsoulis (M)
Mike Gravenor (M)
Mike Inouye (M)
Mirek Skrypak (M)
Moritz Gerstung (M)
Munir Pirmohamed (M)
Myer Glickman (M)
Naomi Herz (N)
Neil Davies (N)
Nick Hall (N)
Nilesh Samani (N)
Olena Seminog (O)
Paula Lorgelly (P)
Pedro Machado (P)
Qiuju Li (Q)
Rachel Denholm (R)
Raph Goldacre (R)
Raymond Carragher (R)
Reecha Sofat (R)
Rohan Takhar (R)
Ronan Lyons (R)
Rouven Priedon (R)
Rowena Griffiths (R)
Rupert Payne (R)
Ruwanthi Kolamunnage-Dona (R)
Safa Salim (S)
Sandosh Padmanabhan (S)
Sarah Onida (S)
Seamus Kent (S)
Seb Bacon (S)
Sinduja Manohar (S)
Sonya Babu-Narayan (S)
Spencer Keene (S)
Susheel Varma (S)
Thomas Lawrence (T)
Tianxiao Wang (T)
Tim Wilkinson (T)
Tom Norris (T)
Tom Palmer (T)
Vahé Nafilyan (V)

Commentaires et corrections

Type : CommentIn

Informations de copyright

© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY. No commercial re-use. See rights and permissions. Published by BMJ.

Déclaration de conflit d'intérêts

Competing interests: All authors have completed the ICMJE uniform disclosure form at www.icmje.org/coi_disclosure.pdf and declare: support from the funders listed above; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work. SH works as a data scientist and data curator for NHS Digital, which holds and processes the data.

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Auteurs

Angela Wood (A)

British Heart Foundation Cardiovascular Epidemiology Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK.
British Heart Foundation Centre of Research Excellence, University of Cambridge, Cambridge, UK.
Health Data Research UK Cambridge, Wellcome Genome Campus and University of Cambridge, Cambridge, UK.
National Institute for Health Research Blood and Transplant Research Unit in Donor Health and Genomics, University of Cambridge, Cambridge, UK.
The Alan Turing Institute, London, UK.

Rachel Denholm (R)

Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
Health Data Research UK, South West Better Care Partnership, Bristol, UK.
National Institute for Health Research Bristol Biomedical Research Centre, University of Bristol, Bristol, UK.

Sam Hollings (S)

NHS Digital, Leeds, UK.

Jennifer Cooper (J)

Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
Health Data Research UK, South West Better Care Partnership, Bristol, UK.
National Institute for Health Research Bristol Biomedical Research Centre, University of Bristol, Bristol, UK.

Samantha Ip (S)

British Heart Foundation Cardiovascular Epidemiology Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK.

Venexia Walker (V)

Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA.
MRC University of Bristol Integrative Epidemiology Unit, Bristol, UK.

Spiros Denaxas (S)

The Alan Turing Institute, London, UK.
British Heart Foundation Research Accelerator, University College London, London, UK.
Institute of Health Informatics, University College London, London, UK.
National Institute for Health Research University College London Hospitals Biomedical Research Centre, University College London, London, UK.

Ashley Akbari (A)

Population Data Science and Health Data Research UK, Swansea University, Swansea, UK.

Amitava Banerjee (A)

Barts Health NHS Trust, The Royal London Hospital, London, UK.
Institute of Health Informatics, University College London, London, UK.
University College London Hospitals NHS Trust, London, UK.

William Whiteley (W)

Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK.
Nuffield Department of Population Health, University of Oxford, Oxford, UK.

Alvina Lai (A)

Institute of Health Informatics, University College London, London, UK.

Jonathan Sterne (J)

Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
Health Data Research UK, South West Better Care Partnership, Bristol, UK.
National Institute for Health Research Bristol Biomedical Research Centre, University of Bristol, Bristol, UK.

Cathie Sudlow (C)

Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK cathie.sudlow@hdruk.ac.uk.
BHF Data Science Centre, Health Data Research UK, London, UK.
Usher Institute, Edinburgh Medical School, University of Edinburgh, Edinburgh, UK.

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