title: Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies.
abstract: 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.
authors.affiliation: Dianne Rios and Mark Harniss are with the Department of Rehabilitation Medicine, School of Medicine, University of Washington, Seattle. Susan Magasi is with the Department of Occupational Therapy, University of Illinois at Chicago. Catherine Novak is with Westat, Rockville, MD.
authors.forename: Dianne
authors.initials: D
authors.lastname: Rios
authors.affiliation: Dianne Rios and Mark Harniss are with the Department of Rehabilitation Medicine, School of Medicine, University of Washington, Seattle. Susan Magasi is with the Department of Occupational Therapy, University of Illinois at Chicago. Catherine Novak is with Westat, Rockville, MD.
authors.forename: Susan
authors.initials: S
authors.lastname: Magasi
authors.affiliation: Dianne Rios and Mark Harniss are with the Department of Rehabilitation Medicine, School of Medicine, University of Washington, Seattle. Susan Magasi is with the Department of Occupational Therapy, University of Illinois at Chicago. Catherine Novak is with Westat, Rockville, MD.
authors.forename: Catherine
authors.initials: C
authors.lastname: Novak
authors.affiliation: Dianne Rios and Mark Harniss are with the Department of Rehabilitation Medicine, School of Medicine, University of Washington, Seattle. Susan Magasi is with the Department of Occupational Therapy, University of Illinois at Chicago. Catherine Novak is with Westat, Rockville, MD.
authors.forename: Mark
authors.initials: M
authors.lastname: Harniss
mesh_terms: D015982:Bias; D006233:Persons with Disabilities; D016021:Epidemiologic Studies; D006801:Humans; D017146:Models, Organizational; D017063:Outcome Assessment, Health Care; D011634:Public Health