CREATE: A New Data Resource to Support Cardiac Precision Health

BACKGROUND: The initiatives of precision medicine and learning health systems require databases with rich and accurately captured data on patient characteristics. We introduce the Clinical Registry, AdminisTrative Data and Electronic Medical Records (CREATE) database, which includes linked data from 4 population databases: Alberta Provincial Project for Outcome Assessment in Coronary Heart Disease (APPROACH; a national clinical registry), Sunrise Clinical Manager (SCM) electronic medical record (city-wide), the Discharge Abstract Database (DAD), and the National Ambulatory Care Reporting System (NACRS). The intent of this work is to introduce a cardiovascular-specific database for pursuing precision health activities using big data analytics. METHODS: We used deterministic data linkage to link SCM electronic medical record data to APPROACH clinical registry data using patient identifier variables. The APPROACH-SCM data set was subsequently linked to DAD and NACRS to obtain inpatient and outpatient cohort data. We further validated the quality of the linkage, where applicable, in these databases by comparing against the Alberta Health Insurance Care Plan registry database. RESULTS: We achieved 99.96% linkage across these 4 databases. Currently, there are 30,984 patients with 35,753 catheterizations in the CREATE database. The inpatient cohort contained 65.75% (20,373/30,984) of the patient sample, whereas the outpatient cohort contained 29.78% (9226/30,984). The infrastructure and the process to update and expand the database has been established. CONCLUSIONS: CREATE is intended to serve as a database for supporting big data analytics activities surrounding cardiac precision health. The CREATE database will be managed by the Centre for Health Informatics at the University of Calgary, and housed in a secure high-performance computing environment.