American journal of physical medicine & rehabilitation · 2026
Future of International Spinal Cord Injury: Perspectives for Policy and Practice Implementation of the International Spinal Cord Injury Cohort Study.
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Bickenbach Jerome, Pacheco Barzallo Diana, Gross-Hemmi Mirja H, Engkasan Julia, Escorpizo Reuben, Middleton James W, Noonan Vanessa K, Stucki Gerold
Аннотация
BACKGROUND: The International Spinal Cord Injury (InSCI) Community Survey is the most comprehensive global data source describing the lived experience of persons with spinal cord injury or disease (SCI/D) living in the community. By collecting standardized, self-reported data across countries and health systems, InSCI operationalizes the World Health Organization's concept of functioning and provides a 360-degree perspective on health, participation, and social inclusion.
OBJECTIVE: This paper adopts a prospective perspective and examines how InSCI data can be implemented to inform practice and policy. It explores how InSCI can support the development of evidence-based Theories of Change (ToC) to guide implementation strategies addressing unmet needs and inequities experienced by persons with SCI/D.
METHODS: Building on findings from the first 2 waves of the InSCI survey, conducted between 2017-2019 and 2022-2024, this paper synthesizes methodological principles for implementation, situates InSCI within contemporary implementation science, and examines real-world applications of InSCI data at the national and international levels.
RESULTS: InSCI provides a unique evidentiary foundation for ToC development by integrating biomedical, personal, social, and environmental dimensions of functioning. Its comprehensive data model enables identification of priority gaps, formulation of realistic implementation pathways, and definition of measurable indicators for monitoring change. Existing national applications, including the Swiss National Strategy for Spinal Cord Injury, demonstrate the feasibility of translating InSCI evidence into coordinated policy and system-level reforms.
CONCLUSION: InSCI is uniquely positioned to guide evidence-informed implementation of practice, programs, and policies for persons with SCI/D. By aligning with emerging global initiatives-particularly those led by the World Health Organization-and by grounding implementation in the concept of functioning and human rights, InSCI can support meaningful progress toward full inclusion, participation, and long-term wellbeing of persons living with SCI/D.
OBJECTIVE: This paper adopts a prospective perspective and examines how InSCI data can be implemented to inform practice and policy. It explores how InSCI can support the development of evidence-based Theories of Change (ToC) to guide implementation strategies addressing unmet needs and inequities experienced by persons with SCI/D.
METHODS: Building on findings from the first 2 waves of the InSCI survey, conducted between 2017-2019 and 2022-2024, this paper synthesizes methodological principles for implementation, situates InSCI within contemporary implementation science, and examines real-world applications of InSCI data at the national and international levels.
RESULTS: InSCI provides a unique evidentiary foundation for ToC development by integrating biomedical, personal, social, and environmental dimensions of functioning. Its comprehensive data model enables identification of priority gaps, formulation of realistic implementation pathways, and definition of measurable indicators for monitoring change. Existing national applications, including the Swiss National Strategy for Spinal Cord Injury, demonstrate the feasibility of translating InSCI evidence into coordinated policy and system-level reforms.
CONCLUSION: InSCI is uniquely positioned to guide evidence-informed implementation of practice, programs, and policies for persons with SCI/D. By aligning with emerging global initiatives-particularly those led by the World Health Organization-and by grounding implementation in the concept of functioning and human rights, InSCI can support meaningful progress toward full inclusion, participation, and long-term wellbeing of persons living with SCI/D.