. 2021 Apr 7:373:n826.

doi: 10.1136/bmj.n826.

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

Angela Wood^{1

2

3

4

5}, Rachel Denholm^{6

7

8}, Sam Hollings⁹, Jennifer Cooper^{6

7

8}, Samantha Ip¹, Venexia Walker^{6

10

11}, Spiros Denaxas^{5

12

13

14}, Ashley Akbari¹⁵, Amitava Banerjee^{16

13

17}, William Whiteley^{18

19}, Alvina Lai¹³, Jonathan Sterne^{6

7

8}, Cathie Sudlow^{20

21

22}; CVD-COVID-UK consortium

Collaborators, Affiliations

Collaborators

CVD-COVID-UK consortium:
Abdel Douiri, Abdul Qadr Akinoso-Imran, Adrian Jonas, Ajay Shah, Alex Handy, Alun Davies, Amanj Kurdi, Anna Hansell, Annemarie Docherty, Arun Pherwani, Ashkan Dashtban, Ben Bray, Ben Cairns, Ben Goldacre, Ben Humberstone, Bilal Mateen, Brett Doble, Brian Roberts, Carole Morris, Caroline Dale, Caroline Rogers, Charles Wolfe, Christopher Tomlinson, Claire Lawson, Clea du Toit, Colin Berry, Craig Smith, Dan O'Connell, Daniel Harris, David Brind, David Cromwell, David Hughes, David Moreno Martos, Debbie Ringham, Deborah Lawler, Deborah Lowe, Elena Nikiphorou, Eloise Withnell, Emanuele Di Angelantonio, Eva Morris, Ewan Birney, Fabian Falck, Fatemeh Torabi, Felix Greaves, Florian Falter, Francesco Zaccardi, Frank Kee, Gareth Davies, George Nicholson, Gwenetta Curry, Haoting Zhang, Harry Hemingway, Harry Wilde, Hoda Abbasizanjani, Honghan Wu, Howard Tang, Huan Wang, Ify Mordi, Jackie MacArthur, Jane Lyons, Jennifer Beveridge, Jessica Barrett, Jianhua Wu, Johan Thygesen, John Danesh, John Dennis, Jon Boyle, Julian Halcox, Kamlesh Khunti, Kate Cheema, Katherine Brown, Ken Li, Kim Kavanagh, Laura North, Laura Pasea, Libby Ellins, Livia Pierotti, Lucy Wright, Lydia Martin, Lynn Morrice, Mamas Mamas, Marion Bennie, Mark Barber, Mary Joan Macleod, Massimo Caputo, Maya Buch, Mehrdad Mizani, Michalis Katsoulis, Mike Gravenor, Mike Inouye, Mirek Skrypak, Moritz Gerstung, Munir Pirmohamed, Myer Glickman, Naomi Herz, Neil Davies, Nick Hall, Nilesh Samani, Olena Seminog, Paula Lorgelly, Pedro Machado, Qiuju Li, Rachel Denholm, Raph Goldacre, Raymond Carragher, Reecha Sofat, Rohan Takhar, Ronan Lyons, Rouven Priedon, Rowena Griffiths, Rupert Payne, Ruwanthi Kolamunnage-Dona, Safa Salim, Sandosh Padmanabhan, Sarah Onida, Seamus Kent, Seb Bacon, Sinduja Manohar, Sonya Babu-Narayan, Spencer Keene, Susheel Varma, Thomas Lawrence, Tianxiao Wang, Tim Wilkinson, Tom Norris, Tom Palmer, Vahé Nafilyan

Affiliations

¹ British Heart Foundation Cardiovascular Epidemiology Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK.
² British Heart Foundation Centre of Research Excellence, University of Cambridge, Cambridge, UK.
³ Health Data Research UK Cambridge, Wellcome Genome Campus and University of Cambridge, Cambridge, UK.
⁴ National Institute for Health Research Blood and Transplant Research Unit in Donor Health and Genomics, University of Cambridge, Cambridge, UK.
⁵ The Alan Turing Institute, London, UK.
⁶ Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
⁷ Health Data Research UK, South West Better Care Partnership, Bristol, UK.
⁸ National Institute for Health Research Bristol Biomedical Research Centre, University of Bristol, Bristol, UK.
⁹ NHS Digital, Leeds, UK.
¹⁰ University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA.
¹¹ MRC University of Bristol Integrative Epidemiology Unit, Bristol, UK.
¹² British Heart Foundation Research Accelerator, University College London, London, UK.
¹³ Institute of Health Informatics, University College London, London, UK.
¹⁴ National Institute for Health Research University College London Hospitals Biomedical Research Centre, University College London, London, UK.
¹⁵ Population Data Science and Health Data Research UK, Swansea University, Swansea, UK.
¹⁶ Barts Health NHS Trust, The Royal London Hospital, London, UK.
¹⁷ University College London Hospitals NHS Trust, London, UK.
¹⁸ Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK.
¹⁹ Nuffield Department of Population Health, University of Oxford, Oxford, UK.
²⁰ Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK cathie.sudlow@hdruk.ac.uk.
²¹ BHF Data Science Centre, Health Data Research UK, London, UK.
²² Usher Institute, Edinburgh Medical School, University of Edinburgh, Edinburgh, UK.

PMID: 33827854
PMCID: PMC8413899
DOI: 10.1136/bmj.n826

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

Angela Wood et al. BMJ. 2021.

. 2021 Apr 7:373:n826.

doi: 10.1136/bmj.n826.

Authors

Collaborators

CVD-COVID-UK consortium:
Abdel Douiri, Abdul Qadr Akinoso-Imran, Adrian Jonas, Ajay Shah, Alex Handy, Alun Davies, Amanj Kurdi, Anna Hansell, Annemarie Docherty, Arun Pherwani, Ashkan Dashtban, Ben Bray, Ben Cairns, Ben Goldacre, Ben Humberstone, Bilal Mateen, Brett Doble, Brian Roberts, Carole Morris, Caroline Dale, Caroline Rogers, Charles Wolfe, Christopher Tomlinson, Claire Lawson, Clea du Toit, Colin Berry, Craig Smith, Dan O'Connell, Daniel Harris, David Brind, David Cromwell, David Hughes, David Moreno Martos, Debbie Ringham, Deborah Lawler, Deborah Lowe, Elena Nikiphorou, Eloise Withnell, Emanuele Di Angelantonio, Eva Morris, Ewan Birney, Fabian Falck, Fatemeh Torabi, Felix Greaves, Florian Falter, Francesco Zaccardi, Frank Kee, Gareth Davies, George Nicholson, Gwenetta Curry, Haoting Zhang, Harry Hemingway, Harry Wilde, Hoda Abbasizanjani, Honghan Wu, Howard Tang, Huan Wang, Ify Mordi, Jackie MacArthur, Jane Lyons, Jennifer Beveridge, Jessica Barrett, Jianhua Wu, Johan Thygesen, John Danesh, John Dennis, Jon Boyle, Julian Halcox, Kamlesh Khunti, Kate Cheema, Katherine Brown, Ken Li, Kim Kavanagh, Laura North, Laura Pasea, Libby Ellins, Livia Pierotti, Lucy Wright, Lydia Martin, Lynn Morrice, Mamas Mamas, Marion Bennie, Mark Barber, Mary Joan Macleod, Massimo Caputo, Maya Buch, Mehrdad Mizani, Michalis Katsoulis, Mike Gravenor, Mike Inouye, Mirek Skrypak, Moritz Gerstung, Munir Pirmohamed, Myer Glickman, Naomi Herz, Neil Davies, Nick Hall, Nilesh Samani, Olena Seminog, Paula Lorgelly, Pedro Machado, Qiuju Li, Rachel Denholm, Raph Goldacre, Raymond Carragher, Reecha Sofat, Rohan Takhar, Ronan Lyons, Rouven Priedon, Rowena Griffiths, Rupert Payne, Ruwanthi Kolamunnage-Dona, Safa Salim, Sandosh Padmanabhan, Sarah Onida, Seamus Kent, Seb Bacon, Sinduja Manohar, Sonya Babu-Narayan, Spencer Keene, Susheel Varma, Thomas Lawrence, Tianxiao Wang, Tim Wilkinson, Tom Norris, Tom Palmer, Vahé Nafilyan

Affiliations

¹ British Heart Foundation Cardiovascular Epidemiology Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK.
² British Heart Foundation Centre of Research Excellence, University of Cambridge, Cambridge, UK.
³ Health Data Research UK Cambridge, Wellcome Genome Campus and University of Cambridge, Cambridge, UK.
⁴ National Institute for Health Research Blood and Transplant Research Unit in Donor Health and Genomics, University of Cambridge, Cambridge, UK.
⁵ The Alan Turing Institute, London, UK.
⁶ Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
⁷ Health Data Research UK, South West Better Care Partnership, Bristol, UK.
⁸ National Institute for Health Research Bristol Biomedical Research Centre, University of Bristol, Bristol, UK.
⁹ NHS Digital, Leeds, UK.
¹⁰ University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA.
¹¹ MRC University of Bristol Integrative Epidemiology Unit, Bristol, UK.
¹² British Heart Foundation Research Accelerator, University College London, London, UK.
¹³ Institute of Health Informatics, University College London, London, UK.
¹⁴ National Institute for Health Research University College London Hospitals Biomedical Research Centre, University College London, London, UK.
¹⁵ Population Data Science and Health Data Research UK, Swansea University, Swansea, UK.
¹⁶ Barts Health NHS Trust, The Royal London Hospital, London, UK.
¹⁷ University College London Hospitals NHS Trust, London, UK.
¹⁸ Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK.
¹⁹ Nuffield Department of Population Health, University of Oxford, Oxford, UK.
²⁰ Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK cathie.sudlow@hdruk.ac.uk.
²¹ BHF Data Science Centre, Health Data Research UK, London, UK.
²² Usher Institute, Edinburgh Medical School, University of Edinburgh, Edinburgh, UK.

PMID: 33827854
PMCID: PMC8413899
DOI: 10.1136/bmj.n826

Abstract

Objective: 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.

Design: Data resource comprising linked person level records from national healthcare settings for the English population, accessible within NHS Digital's new trusted research environment.

Setting: 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.

Participants: 54.4 million people alive on 1 January 2020 and registered with an NHS general practitioner in England.

Main measures of interest: 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.

Results: 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.

Conclusions: 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.

PubMed Disclaimer

Conflict of interest statement

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.

Figures

**Fig 1**
Overview of current (in bold) and planned data flows into NHS Digital Trusted Research Environment (TRE) for England

**Fig 2**
Data sources reporting person level data on ethnicity, incident stroke or transient ischaemic attack (TIA), and incident myocardial infarction

**Fig 3**
Data sources reporting person level data on confirmed or suspected covid-19 diagnoses between 1 January 2020 and 31 October 2020 (n=959 470). Numbers indicate distinct people with a confirmed or suspected covid-19 diagnosis

See this image and copyright information in PMC

Comment in

Covid-19, open science, and the CVD-COVID-UK initiative.
Ross JS. Ross JS. BMJ. 2021 Apr 7;373:n898. doi: 10.1136/bmj.n898. BMJ. 2021. PMID: 33827892 No abstract available.

References

1. Cavallaro F, Lugg-Widger F, Cannings-John R, Harron K. Open Letter: Reducing barriers to data access for research in the public interest—lessons from covid-19. BMJ Opinion 2020. https://blogs.bmj.com/bmj/2020/07/06/reducing-barriers-to-data-access-fo...
1. Jones KH, Ford DV, Lyons RA. The SAIL Databank: 10 years of spearheading data privacy and research utility, 2007-2017. Swansea University. [cited 2021 Feb 19]. https://saildatabank.com/
1. McGurnaghan SJ, Weir A, Bishop J, et al. Public Health Scotland COVID-19 Health Protection Study Group. Scottish Diabetes Research Network Epidemiology Group . Risks of and risk factors for COVID-19 disease in people with diabetes: a cohort study of the total population of Scotland. Lancet Diabetes Endocrinol 2021;9:82-93. 10.1016/S2213-8587(20)30405-8 - DOI - PMC - PubMed
1. Shah ASV, Wood R, Gribben C, et al. . Risk of hospital admission with coronavirus disease 2019 in healthcare workers and their households: nationwide linkage cohort study. BMJ 2020;371:m3582. 10.1136/bmj.m3582 - DOI - PMC - PubMed
1. Siggaard T, Reguant R, Jørgensen IF, et al. . Disease trajectory browser for exploring temporal, population-wide disease progression patterns in 7.2 million Danish patients. Nat Commun 2020;11:4952. 10.1038/s41467-020-18682-4 - DOI - PMC - PubMed

Publication types

Actions

MeSH terms

Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

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

Collaborators

Affiliations

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

Authors

Collaborators

Affiliations

Abstract

Conflict of interest statement

Figures

Comment in

References

Publication types

MeSH terms

Substances

Grants and funding

LinkOut - more resources

Full Text Sources

Other Literature Sources

Medical

Research Materials