How an electronic health record became a real-world research resource: comparison between London's Whole Systems Integrated Care database and the Clinical Practice Research Datalink

• Published in: BMC medical informatics and decision making Vol. 20; no. 1; p. 71
• Main Authors: Bottle, Alex, Cohen, Carole, Lucas, Amanda, Saravanakumar, Kavitha, Ul-Haq, Zia, Smith, Wayne, Majeed, Azeem, Aylin, Paul
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 20.04.2020; BioMed Central; BMC
• Subjects: Age composition; Chronic diseases; Chronic illnesses; Clinical medicine; Clinical practice research Datalink; Community health care; Data warehouses; Data warehousing; Databases, Factual; Delivery of Health Care, Integrated; Demographics; Demography; Electronic Health Records; Electronic medical records; Electronic records; Emergency medical care; Health care; Health care industry; Hospitals; Information sharing; Integrated care; London; Mapping; Medical electronics; Medical records; Mental health; Mental health services; Patient care; Patients; Practice research; Primary care; Prospective Studies; Real world evidence; Warehouse stores; London; United Kingdom; United Kingdom > UK; England; Real world evidence; Integrated care; Clinical practice research Datalink; Data warehousing; Electronic medical records
• ISSN: 1472-6947; 1472-6947
• DOI: 10.1186/s12911-020-1082-7

In the UK, several initiatives have resulted in the creation of local data warehouses of electronic patient records. Originally developed for commissioning and direct patient care, they are potentially useful for research, but little is known about them outside their home area. We describe one such local warehouse, the Whole Systems Integrated Care (WSIC) database in NW London, and its potential for research as the "Discover" platform. We compare Discover with the Clinical Practice Research Datalink (CPRD), a popular UK research database also based on linked primary care records. We describe the key features of the Discover database, including scope, architecture and governance; descriptive analyses compare the population demographics and chronic disease prevalences with those in CPRD. As of June 2019, Discover held records for a total of 2.3 million currently registered patients, or 95% of the NW London population; CPRD held records for over 11 million. The Discover population matches the overall age-sex distribution of the UK and CPRD but is more ethnically diverse. Most Discover chronic disease prevalences were comparable to the national rates. Unlike CPRD, Discover has identifiable care organisations and postcodes, allowing mapping and linkage to healthcare provider variables such as staffing, and includes contacts with social, community and mental health care. Discover also includes a consent-to-contact register of over 3000 volunteers to date for prospective studies. Like CPRD, Discover has been a number of years in the making, is a valuable research tool, and can serve as a model for other areas developing similar data warehouses.