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

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

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 OUTCOME MEASURES: 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.