Abstract
Context: Spinal cord injury (SCI) presents numerous physiological, psychosocial, and environmental complexities resulting in significant healthcare system resource demands. Objective: To describe the current health system surveillance mechanisms in Ontario, Canada and highlight gaps in health surveillance among adults with SCI across their lifespan. Methods: A review of administrative data sources capturing SCI-specific information took place via internet searching and networking among SCI rehabilitation and health services experts with emphasis on functionality, health service utilization, and quality of life data. Results: The review identified a distinct paucity of data elements specific to the health surveillance needs of individuals with SCI living in the community. The gaps identified are: (1) a lack of data usability; (2) inadequate linkage between available datasets; (3) inadequate/infrequent reporting of outcomes; (4) a lack of relevant content/patient-reported outcomes; and, (5) failure to incorporate additional data sources (e.g. Insurance datasets). Conclusion: Currently, SCI-specific health data is disproportionately weighted towards the first 3-6 months post injury with detailed data regarding pre-hospital care, acute management and rehabilitation, but little existing infrastructure supporting community-based health surveillance. Given this reality, the bolstering of meaningful community health surveillance of this population across the lifespan is needed. Addressing the identified gaps in health surveillance must inform the creation of a comprehensive community health dataset incorporating patient-reported outcome measures and enabling linkage with existing administrative and/or clinical databases. A future harmonized data surveillance strategy would, in turn, positively impact function, health services, resource utilization and health-related quality of life surveillance.