4.6 Article

Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies

Journal

AMERICAN JOURNAL OF PUBLIC HEALTH
Volume 106, Issue 12, Pages 2137-2144

Publisher

AMER PUBLIC HEALTH ASSOC INC
DOI: 10.2105/AJPH.2016.303448

Keywords

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Funding

  1. National Institutes of Health Toolbox [HHS-N-260-2006-00007-C]
  2. National Institute on Disability and Rehabilitation Research and Training Centers on Improving Measurement of Medical Rehabilitation Outcomes [H133B090024]
  3. National Children's Study

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People with disabilities are largely absent from mainstream health research. Exclusion of people with disabilities may be explicit, attributable to poorly justified exclusion criteria, or implicit, attributable to inaccessible study documents, interventions, or research measures. Meanwhile, people with disabilities experience poorer health, greater incidence of chronic conditions, and higher health care expenditure than people without disabilities. We outline our approach to accessible research design-research accessible to and inclusive of people with disabilities. We describe a model that includes 3 tiers: universal design, accommodations, and modifications. Through our work on several large-scale research studies, we provide pragmatic examples of accessible research design. Making efforts to include people with disabilities in public health, epidemiological, and outcomes studies will enhance the interpretability of findings for a significant patient population.

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