Linking electronic health records for research on a nationwide cohort including over 54 million people in England

Wood, A.; Denholm,; R., Hollings; S., Cooper; J. A., Ip; S., Walker; V., Denaxas; S., Akbari; A., Sterne; J., Sudlow; C., CVD-COVID-UK Consortium

Objectives: Describe a new England-wide electronic health record (EHR) resource enabling whole population research on Covid-19 and cardiovascular disease whilst ensuring data security and privacy and maintaining public trust. Design: Cohort comprising linked person-level records from national healthcare settings for the English population accessible within the new NHS Digital 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 1st 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 (TIA) and incident myocardial infarc-tion (MI)) and all-cause mortality between 1st January and 31st October 2020. Results: The linked cohort includes over 96% of the English population. By combining person-level data across national healthcare settings, data on age, sex and ethnicity are complete for over 95% of the population. Among 53.2M people with no prior diagnosis of stroke/TIA, 98,721 had an incident stroke/TIA, of which 30% were recorded only in primary care and 4% only in death registry records. Among 53.1M people with no prior history of MI, 62,966 had an incident MI, of which 8% were recorded only in primary care and 12% only in death records. A total of 959,067 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 48,433 participants in death regis-try records). While 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 demonstrates the importance of linking person-level data across health settings to maximize completeness of key characteristics and to ascertain cardiovascular events and Covid-19 diagnoses. Although established initially to support research on Covid-19 and cardiovascular disease to benefit clinical care and public health and to inform health care policy, it can broaden further to enable a very wide range of research.