Among Pregnant Patients With Substance Use Disorder, Stigmatizing Language in Clinical Notes Undermines Willingness to Engage in Care
In April 2021, the US adopted an “Open Notes” rule, requiring that patients have immediate access to their electronic medical record via patient portals. Medical and test result communications between healthcare clinicians can include stigmatizing language (actual or perceived). It is not known how the language and tone of clinical notes are viewed by patients who experience substantial stigma—women with substance use disorder (SUD) who are pregnant—and how these perceptions may impact patients’ willingness to engage in care. Researchers recruited adult US females with a history of SUD and pregnancy to answer survey (five-point Likert scale) and free-text questions regarding two hypothetical patient notes.
- Of the 407 respondents (of 489 recruited), 79 percent reported that “words healthcare providers write in my health records make me feel different about the medical care I receive.” Almost half (45 percent) reported not sharing information because they did not want it to show up in their record or their child’s.
- Participants preferred certain phrases, including “substance use disorder” over “addiction.”
- Respondents endorsed that the use of quotation marks (63 percent) and “denies” (72 percent) signified that the clinician did not believe the patient.
Comments: What clinicians write in care notes may alter patients’ perceptions of themselves and their healthcare team, and could impact their willingness to discuss sensitive topics. Interventions are needed to improve the patient-centeredness of “Open Notes,” and to provide feedback to clinicians on what could be considered stigmatizing language, including strategies to adjust language.
Ximena A. Levander, MD
Reference: Sharko M, Ancker JS, Sharma M, et al. Pregnant patients are less likely to disclose substance use if they perceive stigma in their clinic notes. J Gen Intern Med. [Epub ahead of print] 2025. doi:10.1007/s11606-025-09869-w