Thie study aims to identify and describe the factors determining functioning, health and wellbeing of people living with spinal cord injury (SCI). The goal is to understand the problems and needs of people living with SCI within and across the 22 countries participating in the first wave of the International Spinal Cord Injury survey (InSCI), and to propose responses on how the health system can react to the needs. The InSCI is an important first step of the international collaborative effort in grounding the Learning Health System for SCI (LHS-SCI). The InSCI will provide a unique opportunity for participating countries to learn from each other and to build research and policy capacity. The InSCI is embedded in the WHO Global Disability Action Plan and will be the first standardized survey on health, functioning and wellbeing of persons with SCI to be executed simultaneously in 22 countries across all six WHO world regions. The InSCI is supported by the WHO, the International Spinal Cord Society (ISCoS) and the International Society of Physical and Rehabilitation Medicine (ISPRM). InSCI is a cross-sectional multi-national community survey. The first wave was completed between 2017 and 2019, and with planned follow-ups each five years. The SCI milieus in Norway, including the users, have assembled to conduct the Norwegian part of the InSCI (InSCI-Nor). In the frist wave, 1456 persons with SCI were invited to respond to a self-report questionnaire with mixed-mode collection options (paper-pencil, telephone interviews, online).
SCI and associated health problems lead to premature mortality and increased risk for lower physical and mental health compared to the general population. People with SCI frequently face widespread barriers to maintaining a healthy lifestyle and accessing health-care services. Weaknesses in health and rehabilitation systems can worsen the burden of disability and lead to poorer health outcomes, reduced wellbeing, and increased risk of dependence and restricted participation. Systematic data collection and evaluation of the lived experience of SCI, and also the state of SCI-relevant health and rehabilitation systems is needed. This will provide essential information on what society can do to improve the situation of persons with SCI and enhancing their health, functioning and wellbeing. The InSCI will serve as a platform to generate evidence on the lived experience of persons with SCI worldwide, and identify potential targets for interventions to improve the situation of people living with SCI. The potential for implementing the results from this research project lies in the grounding of the LHS-SCI and that InSCI is foreseen to be repeated every five years to evaluate progress in the health system development and service provision. LHS-SCI is based on the principle that health systems “learn” when they can rely on cyclical dynamics to identify issues, create responses, implement changes, observe the consequences, respond to the implementation results, and revise and reshape the responses – thus, learn from success and failure. The LHS-SCI will achieve its goal in three ways; by generating data (InSCI) and description of the societal response to SCI; implementing recommendations by means of national stakeholder dialogues; and building SCI-relevant policy and research capacity. The participating countries are from different stages of economic development and health care systems, thus providing a unique comparative learning context and opportunity for stakeholders and participating countries to learn from each other.
