Incorporating history into disparities research: A model for interdisciplinary collaboration and trust building

Abstract

BackgroundTrust and mistrust of the healthcare system by Black and African American individuals is often cited as a primary barrier to willingness to access healthcare and low representation in clinical research. The United States Public Health Service Syphilis Study at Tuskegee is most often cited as the sole reason for this mistrust, however similar and widespread injustices, as well as the history of segregated health systems particularly in the stroke belt, laid the foundation for current health and research inequities. Medical discourses and practices positioned the Black or African American body as “inferior” and created disparities in research, diagnostic practices, and service provision.MethodOur team collaborated with a historian of psychiatry and disability to document the historical factors that have created structural inequities in the South and beyond. The historian (KS) collected archival material related to Milledgeville Central State Hospital in Georgia including physical documents like annual reports, case studies, policies and procedures, and letters from patients. Annual reports which contained extensive diagnostic data were photocopied, computerized and analyzed to characterize patient diagnosis (mental, physical, age‐related), cause of death, and cost expended per patient, by race and gender.ResultsOur data documents the impact of segregated services, racist medical attitudes, abusive treatments, malpractices, physical labor exploitation, unlivable conditions, use of unapproved drugs, and involuntarily sterilizations in B/AA patients from 1956‐1970. Significant diagnostic disparities by race were obvious especially for “cerebral arteriosclerosis” and “schizophrenia”. Here we present data on first admissions diagnosis by age, gender, and race, as well as death rate and cause, and group level fiscal reports.ConclusionAn analysis of historical data demonstrates clear linkages with current issues and practices. Addressing structural racism in research, education and service provision requires an honest reckoning with past practices that persist today. We demonstrate the ways that scientific teams can work with trained historians to unpack the consequences of past policies and set out a method and agenda for collaborative interdisciplinary research moving forward.