Underrepresentation of blind and deaf participants in the All of Us Research Program

Abstract

Blind and deaf individuals comprise large populations that often experience health disparities, with those from marginalized gender, racial, ethnic and low-socioeconomic communities commonly experiencing compounded health inequities. Including these populations in precision medicine research is critical for scientific benefits to accrue to them. We assessed representation of blind and deaf people in the All of Us Research Program (AoURP) 2018-2023 cohort of participants who provided electronic health records and compared it with the Centers for Disease Control and Prevention 2018 national estimates by key demographic characteristics and intersections thereof. Blind and deaf AoURP participants are considerably underrepresented in the cohort, especially among working-age adults (younger than age 65 years), as well as Asian and multi-racial participants. Analyses show compounded underrepresentation at the intersection of multiple marginalization (that is, racial or ethnic minoritized group, female sex, low education and low income), most substantively for working-age blind participants identifying as Black or African American female with education levels lower than high school (representing one-fifth of their national prevalence). Underrepresentation raises concerns about the generalizability of findings in studies that use these data and limited benefits for the already underserved blind and deaf populations.

Extended Data Figure 1.. Cohort description

Breakdown of full study population (AoURP EHR volunteers) into blind and deaf cohorts. ^a See Supplemental Table 2 for the full list of SNOMED standard concept names and codes that determine cohort membership when found in participant EHR.

Extended Data Figure 2.. Prevalence gaps of blind participants at the intersection of sex, education, and household income (working-age, ≤65 years).

Prevalence comparison between AoURP and national estimates for blind participants in each intersectional group (top); Distances from parity by intersectional group (bottom).

Extended Data Figure 3.. Prevalence gaps of deaf participants at the intersection of sex, education, and household income (working-age, ≤65 years)

Prevalence comparison between AoURP and national estimates for blind participants in each intersectional group (top); Distances from parity by intersectional group (bottom).

Extended Data Figure 4.. Prevalence gaps of blind participants at the intersection of sex, education, and race/ethnicity (working-age, ≤65 years)

Prevalence comparison between AoURP and national estimates for blind participants in each intersectional group (top); Distances from parity by intersectional group (bottom).

Extended Data Figure 5.. Prevalence gaps of deaf participants at the intersection of sex education, and race/ethnicity (working-age, ≤65 years)

Prevalence comparison between AoURP and national estimates for blind participants in each intersectional group (top); Distances from parity by intersectional group (bottom).

Extended Data Figure 6.. Prevalence gaps of deaf participants (working-age, ≤65 years) by intersectional race/ethnicity, sex, and education categories

Prevalence gaps at three-level intersectionality for deaf participants: 1) race or ethnicity alone (top); 2) race or ethnicity and sex (middle); and 3) race or ethnicity, sex and education (bottom)

Figure 1.. Prevalence gaps of blind participants (working-age, ≤65 years) by intersectional race or ethnicity, sex, and education categories

Prevalence gaps at three-levels intersectionality for deaf participants: 1) race or ethnicity alone (top); 2) race or ethnicity and sex (middle); and 3) race or ethnicity, sex and education (bottom)