Disability data in the All of Us Research Program | Office Hours 3.28.25

In this video, our team is joined by Lina Sulieman, Ph.D. joins Office Hours to share her research, titled The Disability Representation in the All of Us Research Program.

Disability data are rarely documented in structured format in electronic health records (EHR). The All of Us Research program is collecting self-reported disability from participants. Dr. Sulieman quantified self-reported disability percentages in All of Us and compared it to CDC and Census, and quantified three disability categories in EHR. The All of Us percentages match CDC but higher than census. EHR percentages were lower for cognitive and vision. Using only EHR might exclude participants with incomplete records who are mainly underrepresented populations.

recorded March 28, 2025