Promoting community engagement in spinal cord injury research: a case example

Area of Science:

• Rehabilitation research
• Knowledge translation
• Community-based participatory research

Background:

• Community engagement is vital for effective knowledge translation in spinal cord injury (SCI) research.
• Involving individuals with lived experience, care partners, and research users improves research quality and relevance.

Purpose of the Study:

• To advocate for increased community engagement in SCI research.
• To provide resources for implementing community engagement strategies.
• To illustrate a successful partnership model for SCI research.

Main Methods:

• A perspective article detailing resources and a case study.
• Jefferson College of Rehabilitation Sciences (JCRS) partnered with the North American Spinal Cord Injury Consortium (NASCIC).
• An advisory committee of individuals with SCI was formed to guide a large-scale study on clinical outcome assessment development.

Main Results:

• The advisory committee provided actionable recommendations to enhance recruitment and minimize participant burden.
• The collaboration demonstrated the practical value of incorporating community perspectives into research design.
• Successful implementation of community engagement strategies was achieved.

Conclusions:

• Community engagement is a feasible and valuable approach in SCI research.
• Partnerships between research institutions and patient advocacy groups strengthen research quality.
• Incorporating lived experience is crucial for developing relevant and effective SCI clinical outcome assessments.