Characteristics of patients in platform C19, a COVID-19 research database combining primary care electronic health record and patient reported information

Abstract

Background Data to better understand and manage the COVID-19 pandemic is urgently needed. However, there are gaps in information stored within even the best routinely-collected electronic health records (EHR) including test results, remote consultations for suspected COVID-19, shielding, physical activity, mental health, and undiagnosed or untested COVID-19 patients. Observational and Pragmatic Research Institute (OPRI) Singapore and Optimum Patient Care (OPC) UK established Platform C19, a research database combining EHR data and bespoke patient questionnaire. We describe the demographics, clinical characteristics, patient behavior, and impact of the COVID-19 pandemic using data within Platform C19. Methods EHR data from Platform C19 were extracted from 14 practices across UK participating in the OPC COVID-19 Quality Improvement program on a continuous, monthly basis. Starting 7th August 2020, consenting patients aged 18–85 years were invited in waves to fill an online questionnaire. Descriptive statistics were summarized using all data available up to 22nd January 2021. Findings From 129,978 invitees, 31,033 responded. Respondents were predominantly female (59.6%), white (93.5%), and current or ex-smokers (52.6%). Testing for COVID-19 was received by 23.8% of respondents, of which 7.9% received positive results. COVID-19 symptoms lasted ≥4 weeks in 19.5% of COVID-19 positive respondents. Up to 39% respondents reported a negative impact on questions regarding their mental health. Most (67%-76%) respondents with asthma, Chronic Obstructive Pulmonary Disease (COPD), diabetes, heart, or kidney disease reported no change in the condition of their diseases. Interpretation Platform C19 will enable research on key questions relating to COVID-19 pandemic not possible using EHR data alone.

Data-Resource Profile: United Kingdom Optimum Patient Care Research Database

“…The OPC QI programme in primary care involves a combined review of de-identified EMRs; patients’ responses to disease-specific questionnaires; provision of tailored reports to practices with risk stratification and best-practice support patient management; education workshops, implementation programmes and innovation. 17 The program supports remote patient reviews by completion of key questionnaires that can either replace consultations and QOF reviews or make them easier to deliver by completing pre- (remote) consultation work.…”

Improving COVID-19 Research of University Hospitals in Germany: Formative Usability Evaluation of the CODEX Feasibility Portal

“…Appropriate platforms for shared access to routine data have been developed in various countries, although only a few national solutions have emerged. In the United Kingdom, for example, the platform OpenSAFELY, the COVID-19 Research Platform, 4 or C19, a COVID-19 research database, 5 combining primary care electronic health record and patient reported information. In Germany, too, a national research data platform called “CODEX, Covid-19 Data Exchange Platform,” 6 is to be developed within the German “Network University Medicine (NUM)” 7 that will make data available to researchers nationwide in a standardized manner and in compliance with data protection laws.…”