Collaboration With Deaf Communities to Conduct Accessible Health Surveillance

Abstract

Populations of deaf sign language users experience health disparities unmeasured by current public health surveillance. Population-specific health data are necessary to collaboratively identify health priorities and evaluate interventions. Standardized, reproducible, and language-concordant data collection in sign language is impossible via written or telephone surveys. Deaf and hearing researchers, community members, and other stakeholders developed a broad computer-based health survey based on the telephone-administered Behavioral Risk Factor Surveillance System. They translated survey items from English to sign language, evaluated the translations, and filmed the survey items for inclusion in their custom software. They initiated the second Rochester Deaf Health Survey in 2013 (n=211). Analyses (conducted in 2015) compared Rochester Deaf Health Survey 2013 findings with those of the Behavioral Risk Factor Surveillance System with the general adult population in the same community (2012, n=1,816). The Rochester Deaf Health Survey 2013 participants' mean age was 44.7 (range, 18-87) years. Most were deaf since birth or early childhood (87.1%) and highly educated (53.6% with ≥4 years of college). The median household income was <$35,000. The prevalence of current smokers was low (8.1%). Nearly all (93.8%) reported having health insurance, yet barriers to appropriate health care were evident, with high emergency department use (16.2% with two or more past-year visits) and 22.7% forgoing needed health care in the past year because of cost. Community-engaged research with deaf populations identifies strengths and priorities, providing essential information otherwise missing from existing public health surveillance, and forming a foundation for collaborative dissemination to facilitate broader inclusion of deaf communities.