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

Author:

Anderson Kim D.1ORCID

Affiliation:

1. Department of Physical Medicine and Rehabilitation, MetroHealth System, School of Medicine, Case Western Reserve University, Cleveland, OH 44109, USA

Abstract

Individuals with disabilities are significantly underrepresented in research and are often not included in discussions on diversity, equity, inclusion, and accessibility. The Advisory Committee to the National Institutes of Health Director Working Group on Diversity formed an ad hoc Subgroup on Individuals with Disabilities to develop recommendations on how to enhance the inclusion of people with disabilities in the scientific workforce as well as throughout the research ecosystem. The article summarizes those recommendations and how they came about, then contextualizes them for the spinal cord injury (SCI) research field. Other fields that do not typically include individuals with disabilities in research can learn from the strong history of including people with SCI as research participants. There has been a growing drive within our field to enhance the inclusion of people living with SCI as research partners, but how are we doing with promoting their inclusion in the scientific workforce?

Publisher

MDPI AG

Subject

Health, Toxicology and Mutagenesis,Public Health, Environmental and Occupational Health

Reference19 articles.

1. Centers for Disease Control and Prevention (2023, May 12). Disability and Health Data System (DHDS), Available online: http://dhds.cdc.gov.

2. World Health Organization (2022). Global Report on Health Equity for Persons with Disabilities, World Health Organization.

3. National Institutes of Health (2022, December 01). Advisory Committee to the Director Working Group on Diversity, Subgroup on Individuals with Disabilities. Report, Available online: https://www.acd.od.nih.gov/documents/presentations/12092022_WGD_Disabilities_Subgroup_Report.pdf.

4. Person-first and identity-first language: Developing psychologists’ cultural competence using disability language;Dunn;Am. Psychol.,2015

5. World Health Organization (2002). Towards a Common Language for Functioning, Disability and Health: The International Classification of Functioning, Disability, and Health, World Health Organization.

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