Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies. 2016

Dianne Rios, and Susan Magasi, and Catherine Novak, and Mark Harniss
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.

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.

UI MeSH Term Description Entries
D011634 Public Health Branch of medicine concerned with the prevention and control of disease and disability, and the promotion of physical and mental health of the population on the international, national, state, or municipal level. Community Health,Environment, Preventive Medicine & Public Health,Environment, Preventive Medicine and Public Health,Health, Community,Health, Public
D006233 Disabled Persons Persons with physical or mental disabilities that affect or limit their activities of daily living and that may require special accommodations. Handicapped,People with Disabilities,Persons with Disabilities,Physically Challenged,Physically Handicapped,Physically Disabled,Disabilities, People with,Disabilities, Persons with,Disability, Persons with,Disabled Person,Disabled, Physically,Handicapped, Physically,People with Disability,Person, Disabled,Persons with Disability,Persons, Disabled
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D015982 Bias Any deviation of results or inferences from the truth, or processes leading to such deviation. Bias can result from several sources: one-sided or systematic variations in measurement from the true value (systematic error); flaws in study design; deviation of inferences, interpretations, or analyses based on flawed data or data collection; etc. There is no sense of prejudice or subjectivity implied in the assessment of bias under these conditions. Aggregation Bias,Bias, Aggregation,Bias, Ecological,Bias, Statistical,Bias, Systematic,Ecological Bias,Outcome Measurement Errors,Statistical Bias,Systematic Bias,Bias, Epidemiologic,Biases,Biases, Ecological,Biases, Statistical,Ecological Biases,Ecological Fallacies,Ecological Fallacy,Epidemiologic Biases,Experimental Bias,Fallacies, Ecological,Fallacy, Ecological,Scientific Bias,Statistical Biases,Truncation Bias,Truncation Biases,Bias, Experimental,Bias, Scientific,Bias, Truncation,Biase, Epidemiologic,Biases, Epidemiologic,Biases, Truncation,Epidemiologic Biase,Error, Outcome Measurement,Errors, Outcome Measurement,Outcome Measurement Error
D016021 Epidemiologic Studies Studies designed to examine associations, commonly, hypothesized causal relations. They are usually concerned with identifying or measuring the effects of risk factors or exposures. The common types of analytic study are CASE-CONTROL STUDIES; COHORT STUDIES; and CROSS-SECTIONAL STUDIES. Epidemiological Studies,Studies, Epidemiologic,Epidemiologic Study,Epidemiological Study,Studies, Epidemiological,Study, Epidemiologic,Study, Epidemiological
D017063 Outcome Assessment, Health Care Research aimed at assessing the quality and effectiveness of health care as measured by the attainment of a specified end result or outcome. Measures include parameters such as improved health, lowered morbidity or mortality, and improvement of abnormal states (such as elevated blood pressure). Assessment, Outcome,Outcome Assessment,Outcome Assessment (Health Care),Outcomes Research,Assessment, Outcomes,Outcome Measures,Outcome Studies,Outcomes Assessment,Assessment, Outcome (Health Care),Assessments, Outcome,Assessments, Outcome (Health Care),Assessments, Outcomes,Measure, Outcome,Measures, Outcome,Outcome Assessments,Outcome Assessments (Health Care),Outcome Measure,Outcome Study,Outcomes Assessments,Research, Outcomes,Studies, Outcome,Study, Outcome
D017146 Models, Organizational Theoretical representations and constructs that describe or explain the structure and hierarchy of relationships and interactions within or between formal organizational entities or informal social groups. Organizational Models,Model, Organizational,Organizational Model

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