Disability Community Perspectives on Participation in Research and Studying Positive Health

TL;DR

People with disabilities are underrepresented in health research despite supporting it, and redefining 'positive health' could improve their inclusion and the relevance of research outcomes.

Contribution

The paper presents a roadmap for redefining positive health outcomes and improving disability inclusion in research through stakeholder perspectives.

Findings

Only about 25% of people with disabilities participate in non-disability-specific research.

Up to 30% of disability stakeholders report being excluded from research due to their disability.

Disability stakeholders emphasize the need to reframe positive health outcomes to better align with childhood-onset disability contexts.

Abstract

What are the main findings?
Despite >80% of people with lived experience of disability endorsing health outcomes research, only about a quarter (1/4) of people report participating in non-disability-specific research and about a quarter (1/4) to a third (1/3) report having been excluded from research because of a disability.Conceptualizations of positive health outcomes that include “absence of disease” need to be reframed in a way that accounts for childhood-onset disability—i.e., biological impairments/conditions that alter one’s power and capacity to act in the world.

Despite >80% of people with lived experience of disability endorsing health outcomes research, only about a quarter (1/4) of people report participating in non-disability-specific research and about a quarter (1/4) to a third (1/3) report having been excluded from research because of a disability.

Conceptualizations of positive health outcomes that include “absence of disease” need to be reframed in a way that accounts for childhood-onset disability—i.e., biological impairments/conditions that alter one’s power and capacity to act in the world.

What are the implications of the main findings?
Reframing positive health as a research outcome in the context of childhood-onset disability may enhance its relevance to the disability community.Researchers can improve disability community inclusion in research through specific actions to strengthen relevance, generalizability, and impact of research.

Reframing positive health as a research outcome in the context of childhood-onset disability may enhance its relevance to the disability community.

Researchers can improve disability community inclusion in research through specific actions to strengthen relevance, generalizability, and impact of research.

Background/Objectives: 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. Methods: 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. Results: 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. Conclusions: 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.

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