We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety.
Greatest Hits
Words Matter: What Do Patients Find Judgmental or Offensive in Outpatient Notes?
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.
Open Notes in Oncology: Patient versus Oncology Clinician Views
Most oncology clinician views about open notes differ from those of patients. For example, 70% percent of clinicians agreed that open notes are a “good idea,” while 98% of patients endorsed this view. Further, 44% of oncology clinicians believed cancer patients would be confused by notes; just 4% of patients reported feeling confused after reading. Patient and clinician views about open notes in oncology are not aligned, with patients expressing considerably more enthusiasm.
Frequency and Types of Patient-Reported Errors in Electronic Health Record Ambulatory Care Notes
As health information transparency increases, patients may perceive important errors in their visit notes, and inviting them to report mistakes that they believe are very serious may be associated with improved record accuracy and patient engagement in safety.
Covid-19 as Innovation Accelerator: Cogenerating Telemedicine Visit Notes with Patients
Over the past decade, Beth Israel Deaconess Medical Center has been committed to sharing clinical notes with its patients. Now, as the Covid-19 pandemic is accelerating the adoption of telemedicine, the hospital’s primary care practice is implementing an initiative called OurNotes. In addition to inviting patients to review notes before and after a visit, this effort also engages patients before the telemedicine visit by soliciting important prework information through an electronic form, and by enabling coproduction of the visit note.
The Views and Experiences of Clinicians Sharing Medical Record Notes With Patients
In this web-based survey study of 1628 clinicians, most viewed note sharing positively (74% agreed that it is a good idea and 74% viewed shared notes as useful for engaging patients in their care), and 37% of physicians surveyed reported spending more time in documentation. Physicians with more years in practice and fewer hours spent in patient care had more positive opinions overall.
Patients Managing Medications and Reading Their Visit Notes: A Survey of OpenNotes Participants
We examined patients’ perceptions of how note reading affects factors related to medication adherence. In addition, we sought to understand their engagement with online medication lists and their willingness to participate in keeping those lists correct and up to date.
OpenNotes After 7 Years: Patient Experiences With Ongoing Access to Their Clinicians’ Outpatient Visit Notes
Following a 2010-2011 pilot intervention in which a limited sample of primary care doctors offered their patients secure Web-based portal access to their office visit notes, the participating sites expanded OpenNotes to nearly all clinicians in primary care, medical, and surgical specialty practices.
Inviting patients and care partners to read doctors’ notes: OpenNotes and shared access to electronic medical records
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.
Your Patient Is Now Reading Your Note: Opportunities, Problems, and Prospects
Patients have unprecedented online access to their medical records. More than 6 million Americans can now read their doctors’ notes via patient portals, and continued rapid growth is likely. Sharing notes with patients may yield important health benefits, including increased patient empowerment and improved medication adherence. Seeing written information, including notes, helps patients remember the plan of care, reinforces patients’ positive behaviors, and strengthens the patient–doctor alliance.
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