Describing the current state of post-rehabilitation health system surveillance in Ontario – an invited review

The Journal of Spinal Cord Medicine, 2019 · DOI: 10.1080/10790268.2019.1605724 · Published: January 1, 2019

Spinal Cord Injury Healthcare Public Health

Simple Explanation

This paper reviews how Ontario's healthcare system monitors the health of adults with spinal cord injuries (SCI) after they leave rehabilitation. It identifies gaps in this monitoring, especially in community-based care. Currently, most data focuses on the initial 3–6 months after injury, lacking detailed information about long-term community health. There is a need for a better community health dataset that includes patient feedback and connects with existing healthcare records. Improving community health surveillance would positively impact the function, healthcare use, and quality of life for individuals with SCI. The authors highlight five key gaps related to the usability of health data in existing databases.

Study Duration

Not specified

Participants

Adults with Spinal Cord Injury in Ontario

Evidence Level

Review

Key Findings

1
There is a distinct lack of data elements specific to the health surveillance needs of individuals with SCI living in the community.
2
Five key gaps were identified: data usability, linkage between datasets, reporting of outcomes, relevant content/patient-reported outcomes, and failure to incorporate additional data sources.
3
SCI-specific health data is disproportionately weighted towards the first 3–6 months post injury, with little existing infrastructure supporting community-based health surveillance.

Research Summary

The review highlights significant gaps in health surveillance for individuals with SCI living in the community in Ontario. Current systems are weighted towards the acute phase post-injury. Key issues include a lack of usable data, inadequate data linkage, infrequent outcome reporting, missing patient-reported outcomes, and failure to use insurance data. The study calls for a comprehensive community health dataset incorporating patient-reported outcomes and linkage with administrative and clinical databases to improve health surveillance and quality of life.

Practical Implications

Improved Data Collection

Implement a comprehensive community health dataset incorporating patient-reported outcome measures.

Enhanced Data Linkage

Establish long-term agreements to link RHSCIR with other administrative provincial datasets.

Better Community Health Surveillance

Bolster meaningful community health surveillance of the SCI population across their lifespan.

Study Limitations

1
Narrow scope focusing on Ontario only.
2
Non-systematic approach to identifying datasets.
3
Paucity of post-discharge data internationally is a common theme in the SCI field

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