The International Spinal Cord Injury Survey: The Way Forward

Abstract

The second International Spinal Cord Injury (InSCI) community survey - a cross-sectional, multi-national, observational cohort study - was conducted in 2022-2024 in 31 countries, representing all 6 of the World Health Organization regions. The survey has produced a wealth of data, both about basic medical issues but also about the lived experience of spinal cord injury/disease (SCI/D). The InSCI survey is part of a larger project known as the Learning Health System for SCI Initiative (LHS-SCI) and utilizes a 360° approach designed to collect information about all aspects of the experience of SCI/D and environmental factors that affect that experience. The objective of this article is, first, to summarize the uniqueness of the InSCI survey and its added value, both from the perspective of health research and human rights, and then to raise a challenge and an opportunity going forward. The first is the challenge of sustainability: although in the short- and medium-term, InSCI is on secure grounds, this cannot be guaranteed in the long-term and a broader, more permanent governance structure and financial strategy must be developed. One suggestion for meeting this challenge is offered. The opportunity is to develop robust and effective implementation strategies by which the rich evidence that the InSCI community survey produces - in terms of intra-country comparisons and across settings from clinical practice to health systems management and national policy - are now being explored by countries participating in the survey. One of these strategies involving the use of national strategies for SCI/D is briefly described.

Keywords: Spinal cord injuries; health surveys; rehabilitation.