Linked electronic health records for research on a nationwide cohort of more than 54 million people in England: data resource
Creators: name: Wood, Angela
name: Denholm, Rachel
name: Hollings, Sam
name: Cooper, Jennifer
name: Ip, Samantha
name: Walker, Venexia
name: Denaxas, Spiros
name: Akbari, Ashley
name: Banerjee, Amitava
name: Whiteley, William
name: Lai, Alvina
name: Sterne, Jonathan
name: Sudlow, Cathie
name: CVD-COVID-UK Consortium
name: Douiri, Abdel
name: Akinoso-Imran, Abdul Qadr
name: Jonas, Adrian
name: Shah, Ajay
name: Handy, Alex
name: Davies, Alun
name: Kurdi, Amanj
name: Hansell, Anna
name: Docherty, Annemarie
name: Pherwani, Arun
name: Dashtban, Ashkan
name: Bray, Ben
name: Cairns, Ben
name: Goldacre, Ben
name: Humberstone, Ben
name: Mateen, Bilal
name: Doble, Brett
name: Roberts, Brian
name: Morris, Carole
name: Dale, Caroline
name: Rogers, Caroline
name: Wolfe, Charles
name: Tomlinson, Christopher
name: Lawson, Claire
name: Du Toit, Clea
name: Berry, Colin
name: Smith, Craig
name: O’Connell, Dan
name: Harris, Daniel
name: Brind, David
name: Cromwell, David
name: Hughes, David
name: Martos, David Moreno
name: Ringham, Debbie
name: Lawler, Deborah
name: Lowe, Deborah
name: Nikiphorou, Elena
name: Withnell, Eloise
name: Di Angelantonio, Emanuele
name: Morris, Eva
name: Birney, Ewan
name: Falck, Fabian
name: Torabi, Fatemeh
name: Greaves, Felix
name: Falter, Florian
name: Zaccardi, Francesco
name: Kee, Frank
name: Davies, Gareth
name: Nicholson, George
name: Curry, Gwenetta
name: Zhang, Haoting
name: Hemingway, Harry
name: Wilde, Harry
name: Abbasizanjani, Hoda
name: Wu, Honghan
name: Tang, Howard
name: Wang, Huan
name: Mordi, Ify
name: MacArthur, Jackie
name: Lyons, Jane
name: Beveridge, Jennifer
name: Barrett, Jessica
name: Wu, Jianhua
name: Thygesen, Johan
name: Danesh, John
name: Dennis, John
name: Boyle, Jon
name: Halcox, Julian
name: Khunti, Kamlesh
name: Cheema, Kate
name: Brown, Katherine
name: Li, Ken
name: Kavanagh, Kim
name: North, Laura
name: Pasea, Laura
name: Ellins, Libby
name: Pierotti, Livia
name: Wright, Lucy
name: Martin, Lydia
name: Morrice, Lynn
name: Mamas, Mamas
name: Bennie, Marion
name: Barber, Mark
name: Macleod, Mary Joan
name: Caputo, Massimo
name: Buch, Maya
name: Mizani, Mehrdad
name: Katsoulis, Michalis
name: Gravenor, Mike
name: Inouye, Mike
name: Skrypak, Mirek
name: Gerstung, Moritz
name: Pirmohamed, Munir
name: Glickman, Myer
name: Herz, Naomi
name: Davies, Neil
name: Hall, Nick
name: Samani, Nilesh
name: Seminog, Olena
name: Lorgelly, Paula
name: Machado, Pedro
name: Li, Qiuju
name: Goldacre, Raph
name: Carragher, Raymond
name: Sofat, Reecha
name: Takhar, Rohan
name: Lyons, Ronan
name: Priedon, Rouven
name: Griffiths, Rowena
name: Payne, Rupert
name: Kolamunnage-Dona, Ruwanthi
name: Salim, Safa
name: Padmanabhan, Sandosh
name: Onida, Sarah
name: Kent, Seamus
name: Bacon, Seb
name: Manohar, Sinduja
name: Babu-Narayan, Sonya
name: Keene, Spencer
name: Varma, Susheel
name: Lawrence, Thomas
name: Wang, Tianxiao
name: Wilkinson, Tim
name: Norris, Tom
name: Palmer, Tom
name: Nafilyan, Vahé
Publisher: name: Apollo - University of Cambridge Repository
Year: 2021
Subjects: Research

description: 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.