Linking Spinal Cord Injury Data Sets To Describe The Patient Journey Following Injury: A Protocol

Background: To optimize traumatic spinal cord injury (tSCI) care, administrative and clinical linked data are required to describe the patient's journey. Objectives: To describe the methods and progress to deterministically link SCI data from multiple databases across the SCI continuum in British Columbia (BC) and Ontario (ON) to answer epidemiological and health service research questions. Methods: Patients with tSCI will be identified from the administrative Hospital Discharge Abstract Database using International Classification of Diseases (ICD) codes from Population Data BC and ICES data repositories in BC and ON, respectively. Admissions for tSCI will range between 1995-2017 for BC and 2009-2017 for ON. Linkage will occur with multiple administrative data holdings from Population Data BC and ICES to create the "Admin SCI Cohorts." Clinical data from the Rick Hansen SCI Registry (and VerteBase in BC) will be transferred to Population Data BC and ICES. Linkage of the clinical data with the incident cases and administrative data at Population Data BC and ICES will create subsets of patients referred to as the "Clinical SCI Cohorts" for BC and ON. Deidentified patient-level linked data sets will be uploaded to a secure research environment for analysis. Data validation will include several steps, and data analysis plans will be created for each research question. Discussion: The creation of provincially linked tSCI data sets is unique; both clinical and administrative data are included to inform the optimization of care across the SCI continuum. Methods and lessons learned will inform future data-linking projects and care initiatives.