A research workgroup of the Disability Equity Collaborative (DEC) Research today released its first paper, "Patient Centered Outcomes Research Priorities to Advance Disability Equity.”
Funded by the Patient-Centered Outcomes Research Institute® (PCORI®), the publication provides a clear, much needed blueprint for the field, identifying critical areas for research, providing guidance for funding agencies, and outlining gaps that policy makers need to address to assure equitable health care for people with disabilities.
“Patient-centered disability research is a new and burgeoning field,” said lead author Megan Morris, MD, Associate Professor in the Division of General Internal Medicine and a faculty member within the Adult and Child Consortium for Health Outcomes Research and Delivery Science (ACCORDS) at the University of Colorado Anschutz Medical Campus. “This new paper provides a comprehensive, critically needed framework for pushing this work forward.”
People with disabilities make up almost 25% of the population in the United States, a number that is expected to increase with the aging population. This population, however, experiences significant disparities in receiving health care. Rigorously designed, patient-centered, outcomes research can investigate the causes of these differences and test interventions that can ensure that all of us get the best possible care.
Stakeholders involved in this DEC study included researchers, policy makers, funders, payers, disability advocates, professional societies, and health care organizations. Together, they identified 14 priorities for disability research. These include, among others:
- Identifying the best methods to collect patients’ disability status in the health care setting;
- Evaluating training approaches for staff and providers on how to deliver accessible, appropriate, and culturally competent health care to people with disabilities;
- Discovering and testing methods for providing timely disability accommodations during all health care interactions,
- Exploring how disability and other identities intersect and affect the health and health care outcomes, and;
- Describing current gaps in practice as well as identifying high performing health care organizations.
In addition to the outlined priorities, the paper presents health and health care outcomes identified by the stakeholders as important to measure, as well as stakeholders’ perceptions of current barriers and challenges in conducting disability health care disparities research.
"The DEC Research workgroup conducted this study during the COVID-19 pandemic—making the work considerably more challenging,” Dr. Morris noted. “However, it also created an important opportunity to shine a bright light on the gaps in health care accessibility for people with disabilities."
Find the paper on the DEC's new website
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The Disability Equity Collaborative, formerly known as the Advancing Equitable Care Cooperative and LEADERs, is the nation’s leading organization providing evidence-based knowledge and practical solutions and tools to address accessible healthcare for persons with disabilities.
Through its workgroups, research, and the virtual community of Disability Accessibility Coordinators, DEC provides a number of opportunities for health plans, health care systems, hospitals, provider practices, and others to learn best practices for creating truly accessible health care for people with disabilities.