Words Matter: What Do Patients Find Judgmental or Offensive in Outpatient Notes?

Abstract

BACKGROUND: Sharing outpatient notes with patients may bring clinically important benefits, but notes may sometimes cause patients to feel judged or offended, and thereby reduce trust. OBJECTIVE: As part of a larger survey examining the effects of open notes, we sought to understand how many patients feel judged or offended due to something they read in outpatient notes, and why. DESIGN: We analyzed responses from a large Internet survey of adult patients who used secure patient portals and had at least 1 visit note available in a 12-month period at 2 large academic medical systems in Boston and Seattle, and in a rural integrated health system in Pennsylvania. PARTICIPANTS: Adult ambulatory patients with portal accounts in health systems that offered open notes for up to 7 years. APPROACH: (1) Quantitative analysis of 2 dichotomous questions, and (2) qualitative thematic analysis of freetext responses on what patients found judgmental or offensive. KEY RESULTS: Among 22,959 patient respondents who had read at least one note and answered the 2 questions, 2,411 (10.5%) reported feeling judged and/or offended by something they read in their note(s). Patients who reported poor health, unemployment, or inability to work were more likely to feel judged or offended. Among the 2,411 patients who felt judged and/or offended, 2,137 (84.5%) wrote about what prompted their feelings. Three thematic domains emerged: (1) errors and surprises, (2) labeling, and (3) disrespect. CONCLUSIONS: One in 10 respondents reported feeling judged/offended by something they read in an outpatient note due to the perception that it contained errors, surprises, labeling, or evidence of disrespect. The content and tone may be particularly important to patients in poor health. Enhanced clinician awareness of the patient perspective may promote an improved medical lexicon, reduce the transmission of bias to other clinicians, and reinforce healing relationships.

Examination of Stigmatizing Language in the Electronic Health Record

“… 9 , 10 One study found that approximately 10% of patients who read their EHR felt judged or offended by their physician’s language. 12 A recent study 7 of physician outpatient notes found that notes about Black patients more often included language indicating disbelief of the patient. However, to our knowledge, ours is the first large-scale analysis quantifying the prevalence of stigmatizing language in the EHR and examining patient and clinician characteristics associated with its use.…”

“…Nationwide, approximately 60% of patients who are offered access to their EHRs viewed their records at least once. 11 Stigmatizing language in records, when viewed by patients, may undermine trust, 12 , 13 which may compromise health outcomes. 14 …”

The benefits and harms of open notes in mental health: A Delphi survey of international experts

“…These and other issues, warrant further, more nuanced empirical examination and we strongly recommend that research investigate patients’ experiences with accessing mental health notes across a range of settings, including outpatient and inpatient care, and encompassing a wide range of patient populations with different mental health diagnoses. Focused empirical research, including randomized controlled trials, are required to better understand whether access influences objective health outcomes and attendance at visits, and whether patients feel judged or offended by what they read [ 27 ]. There is a need for data among patients with serious mental illness, including schizophrenia, personality disorders, or active suicidality to avoid overgeneralizing current evidence to these populations and use cases.…”

The Benefits and Harms of Open Notes in Mental Health: A Delphi Survey of International Experts

“…Focused empirical research is required to better understand whether access influences health outcomes and attendance at visits, and whether patients feel judged or offended by what they read. [25] There is a need for data among patients with serious mental illness, including schizophrenia, personality disorders, or active suicidality to avoid overgeneralizing current evidence to these populations and use cases. Larger scale studies are needed to examine psychiatric clinicians' experiences including emergent concerns with the practice, and potential sources of patient-clinician disagreement.…”