Including People with Spinal Cord Injury in Research as Participants, Partners, and Personnel

Area of Science:

• Disability inclusion in scientific research
• Health equity in scientific research
• Accessibility in scientific research

Background:

• Individuals with disabilities are underrepresented in scientific research and discussions on diversity, equity, inclusion, and accessibility (DEIA).
• An ad hoc Subgroup on Individuals with Disabilities was formed by the National Institutes of Health (NIH) Advisory Committee to enhance DEIA for people with disabilities in science.
• The spinal cord injury (SCI) research field has a history of including individuals with SCI as research participants, offering valuable insights for broader application.

Purpose of the Study:

• To summarize recommendations for enhancing the inclusion of people with disabilities in the scientific workforce and research ecosystem.
• To contextualize these recommendations specifically for the spinal cord injury (SCI) research field.
• To explore progress in promoting the inclusion of people living with SCI as research partners and within the scientific workforce.

Main Methods:

• Review and summarization of recommendations developed by the NIH Subgroup on Individuals with Disabilities.
• Contextualization of these recommendations within the specific domain of spinal cord injury (SCI) research.
• Analysis of the current state of inclusion for individuals with SCI in research participation and the scientific workforce.

Main Results:

• The NIH Subgroup developed recommendations to improve the inclusion of people with disabilities across the research ecosystem.
• The SCI research field's experience provides a model for integrating individuals with disabilities as research participants.
• There is a recognized need to further promote the inclusion of people with SCI as research partners and within the scientific workforce.

Conclusions:

• Implementing the NIH recommendations can significantly enhance disability inclusion in scientific research.
• The SCI research field can serve as a valuable case study for other disciplines seeking to improve disability representation.
• Continued efforts are crucial to ensure equitable representation and participation of individuals with disabilities throughout the scientific workforce and research endeavors.