Engaging Adults with Intellectual and Developmental Disabilities as "Citizen Scientists" to Transform Health Care...

Area of Science:

• Health Services Research
• Disability Studies
• Patient Engagement

Background:

• Adults with intellectual and developmental disabilities (AIDD) encounter significant obstacles in healthcare.
• There is a lack of engagement with AIDD in improving healthcare accessibility.

Purpose of the Study:

• To engage AIDD as partners in identifying primary care access barriers and facilitators.
• To generate actionable solutions for improving healthcare accessibility for AIDD.

Main Methods:

• Utilized the evidence-based Our Voice (OV) citizen science approach.
• Twelve participants (six AIDD, six without IDD) documented clinic accessibility using photographs and narratives.
• Analysis of 170 photographs and 154 narratives from three medical clinics.

Main Results:

• Identified five key accessibility themes: sensory considerations, informational materials, signage/wayfinding, accommodations, and physical accessibility.
• Demonstrated the feasibility of structured, clinic-based accessibility assessment involving AIDD.
• Generated actionable insights for improving primary care access.

Conclusions:

• Citizen science approaches like Our Voice are feasible for engaging AIDD in healthcare research.
• A participatory framework can inform quality improvement initiatives for disability-inclusive healthcare.
• Addressing identified themes can enhance primary care accessibility for AIDD.