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

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 free-text 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.

Inviting patients and care partners to read doctors' notes: OpenNotes and shared access to electronic medical records.

We examined the acceptability and effects of delivering doctors' visit notes electronically (via OpenNotes) to patients and care partners with authorized access to patients' electronic medical records. Adult patients and care partners at Geisinger Health System were surveyed at baseline and after 12 months of exposure to OpenNotes. Reporting on care partner access to OpenNotes, patients and care partners stated that they had better agreement about patient treatment plans and more productive discussions about their care. At follow-up, patients were more confident in their ability to manage their health, felt better prepared for office visits, and reported understanding their care better than at baseline. Care partners were more likely to access and use patient portal functionality and reported improved communication with patients' providers at follow-up. Our findings suggest that offering patients and care partners access to doctors' notes is acceptable and improves communication and patients' confidence in managing their care.

Do Patients Who Access Clinical Information on Patient Internet Portals Have More Primary Care Visits?

BACKGROUND: As health care costs alarm the nation and the debate increases about the impact of health information technologies, patients are reviewing their medical records increasingly through secure Internet portals. Important questions remain about the impact of portal use on office visits. OBJECTIVE: To evaluate whether use of patient Internet portals to access records is associated with increased primary care utilization. RESEARCH DESIGN: A prospective cohort study. SUBJECTS: Primary care patients registered on patient Internet portals, within an integrated health system serving rural Pennsylvania and an academic medical center in Boston. MEASURES: Frequency of "clinical portal use" (days/2 mo intervals over 2 y) included secure messaging about clinical issues and viewing laboratory and radiology findings. In year 2, a subset of patients also gained access to their primary care doctor's visit notes. The main outcome was number of primary care office visits. RESULTS: In the first 2 months of the 2-year period, 14% of 44,951 primary care patients engaged in clinical portal use 2 or more days per month, 31% did so 1 day per month, and the remainder had no clinical portal use. Overall, adjusted for age, sex, and chronic conditions, clinical portal use was not associated with subsequent office visits. Fewer than 0.1% of patients engaged in high levels of clinical portal use (31 or more login days in 2 mo) that were associated with 1 or more additional visits in the subsequent 2 months (months 3 and 4). However, the reverse was true: office visits led to subsequent clinical portal use. Similar trends were observed among patients with or without access to visit notes. CONCLUSIONS: Patients turn to their portals following visits, but clinical portal use does not contribute to an increase in primary care visits.