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New Recommendations for Enhancing Disability Inclusion

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2 years 3 months
12.30.22 By Marie A. Bernard
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It is my pleasure to start 2023 by reporting on the Disabilities Subgroup Report of the Advisory Committee to the Director’s (ACD) Working Group on Diversity (WGD) that was first presented at the ACD meeting on December 9, 2022.

The COSWD team, on behalf of the ACD WGD, convened a panel of subject matter experts to systematically identify the following:

  1. Strategies to enhance data collection focused on individuals with disabilities in the scientific workforce.
  2. Current data and trends on the prevalence of individuals with disabilities in the scientific workforce at various career stages.
  3. Evidence-based practices for supporting individuals with disabilities, accounting for variation in disability type.
  4. Programs with demonstrated success in supporting individuals with disabilities.
  5. Perspectives of individuals with disabilities.

The subgroup quickly realized that to effectively address their charge, they needed to expand the focus to include research addressing the health and health care challenges affecting people with disabilities and increasing the inclusion of people with disabilities in research studies.

The report was formally endorsed by the ACD as a set of recommendations to NIH. Dr. Larry Tabak, who is performing the duties of the NIH director, received the recommendations on NIH’s behalf and emphasized a need to further consider them and their potential implications and implementation.

I am grateful to the subgroup members for their diligence in developing the report. I am particularly indebted to the subgroup cochairs Bonnielin Swenor, Ph.D., Lisa Iezzoni, M.D., and Steven Barnett, M.D. for their leadership. This panel of experts, many with lived experience with disabilities, has given NIH much to consider.

The report contains suggestions applicable to internal NIH operations, how NIH interacts with and what NIH expects of the external scientific community, and how NIH thinks about research participant inclusion and health disparities research. In addition, the report highlights a need for more consistent data gathering, with broadened definitions of disability to allow valid comparisons among studies. Internal NIH staff will spend the next many months considering the recommendations.

What does this report mean for scientists with disabilities? On a personal level, I learned quite a bit about accessibility and the barriers facing individuals with disabilities. As NIH works through the recommendations, there will be opportunities for education regarding barriers and enhancing processes and procedures to foster full inclusivity. The report’s recommendations are a starting point for further discussion and engagement around the needs of people with disabilities. I hope that people with disabilities will recognize that NIH is listening and preparing to engage more broadly.

After the NIH-wide review of the recommendations, NIH will be better positioned to address what can be adopted in the short, medium, and long-term. As we consider policy changes and other modifications, we will engage with the full scientific community, as is our standard.

Stay tuned. NIH will have updates at future ACD meetings.

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