Stigma is a well-documented phenomenon whereby members of marginalized groups are labeled with shame or discredited. Pregnant people and parents with substance use disorder (SUD) are at particular risk of experiencing stigma, which can negatively impact prenatal care, disclosure of medical information, and maternal and infant outcomes.
The Health Stigma Discrimination Framework, developed by researchers in 2019, breaks down the stigmatization process and identifies stigma manifestations, such as derogatory language. Language that is perceived as stigmatizing may appear in clinical notes, which are now widely accessible to patients under the 21st Century Cures Act. If patients perceive stigma in their clinical notes, it could foster distrust and avoidance of care.
To address this, Dr. Marianne Sharko, assistant professor of clinical population health sciences and clinical pediatrics; Meghan Davis, MD/PhD candidate in the Tri-Institutional MD-PhD Program (Tri-I); Mohit Sharma, research manager in population health sciences; Dr. Jyotishman Pathak, founding dean of Arizona State University’s School of Technology for Public Health, and Dr. Jessica Ancker, professor of biomedical informatics and vice chair for educational affairs at Vanderbilt University, evaluated patient perspectives on potentially stigmatizing language in electronic health records (EHRs). Through this study, published in the Journal of the American Medical Informatics Association, researchers determined that the decision to disclose SUD history is often impacted by previous experiences with stigma in documented SUD history and the anticipation of future stigma experiences. Language used in clinical notes, including the word “denies” and the use of quotation marks in notes, can be perceived as stigma and may contribute to decreased trust in providers. Mention of screening instruments and direct reporting of patient history was perceived as less stigmatizing, but many participants wanted to receive more information about their recovery in their notes.
The authors determined that EHR documentation can modulate stigma experiences for women during and after pregnancy through stigmatizing language in clinical notes and facilitating discrimination, decreasing trust in providers and negatively impacting health outcomes. Raising providers' awareness of non-stigmatizing and positive language or implementing technology to prompt non-stigmatizing terminology could contribute to positive experiences among women with a history of pregnancy and SUD.
Given this, Dr. Sharko and team developed a novel framework—building on the Health Stigma Discrimination model—to demonstrate how EHR-facilitated manifestations of stigma can contribute to negative or positive health outcomes. These findings signal that incorporating more compassionate language into notes could be part of a trauma-informed practice that decreases stigma, supports recovery, and increases trust and engagement in care.
- Highlights