News from the External Relations Committee June 24, 2019
First international community survey capturing the lived experience of persons with SCI
The International Spinal Cord Injury (InSCI) community survey is the first multi-national, cross-sectional survey to be conducted simultaneously across 22 countries across the six World Health Organisation (WHO) regions, collecting comparable data on the ‘lived experience’ of persons living in the community with spinal cord injury (SCI). InSCI is a collaborative project between ISCoS and the International Society of Physical and Medicine Rehabilitation (ISPRM), supported by the Swiss Paraplegic Research in Nottwil, Switzerland, as the Coordinating International Study Centre. The Swiss Spinal Cord Injury (SwiSCI) cohort study served as the model for developing the InSCI study protocol and its operational aspects.
Data collection began in January 2017 and was completed in December 2018, with over 12,500 participants with SCI recruited using a mix of sampling frames, recruitment sources and response modes. Early results of the study were presented recently at the 13th ISPRM World Congress held in Kobe, Japan. Further results will be presented in November at ISCoS in Nice, France, with the first six peer-reviewed papers to be published by the end of this year or beginning of 2020 in a special issue of Archives of Physical Medicine and Rehabilitation, with other papers following.
The InSCI survey provides a crucial first step within context of the Learning Health System for Spinal Cord Injury (LHS-SCI) initiative by generating evidence on functioning, health and subjective wellbeing of persons with SCI and description of the societal response to SCI, providing a comparative learning experience among diverging stages of economic development and health care, insurance and social welfare systems globally. Results of the survey will be used to implement the findings on different levels informed by policy briefs and stakeholder dialogues with formulation of recommendations and policies to improve the situation of persons living with a SCI.
It is planned that a follow up 5-year survey will be conducted in 2022/2023, with lessons learned from current survey helping to address some methodological and operational challenges for achievement of an expanded representation of countries and regions globally, particularly low resource settings. Further, an update of the IPSCI report, based on InSCI data is planned to evaulate if and how far the recommendations of the current version have been implemented, which will be released in 2023.
For more information, please contact James Middleton, Chair of External Relations Committee.