Disability Community Perspectives on Participation in Research and Studying Positive Health

Disability affects ~15.7 million children and ~67 million adults in the US, yet these individuals are typically under-represented in clinical research. Clinical research has increasingly broadened its focus on health outcomes to include "positive health," which reflects the capacity of an individual to adapt to challenges and the absence of disease.

A mixed-methods approach is used to investigate disability community perspectives on research inclusion and the use of positive health as an outcome in the context of childhood-onset disability.

Nationally, about one-fourth (1/4) of adults with disabilities and parents/caregivers reported participating in non-disability-specific research; overall, ~23% of adults and ~30% of parents/caregivers report exclusion because of disability, despite >80% endorsing health outcomes research. Disability stakeholders unanimously express the need to reframe positive health in a disability context, provide guidance on how to reframe it as a research outcome, and offer a roadmap for improving research inclusion.

A paradigm shift in how positive health is framed may enhance its relevance to disabilities. An action plan for researchers is derived as a pragmatic approach to strengthen the relevance, generalizability and impact of their research.