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.
Although benefits to patients’ having access to psychiatric notes have been documented, early studies involved patients’ access to hard copies they often reviewed in the presence of mental health professionals. … Clinicians worry about possible harms, and in surveys, many psychiatrists anticipate that patients will become confused, get angry, or decompensate when reading their notes. However, experience challenges the assumption that mental health notes should remain segregated because these patients “cannot handle it.” … Both anecdotally and in surveys, fears among clinicians have largely been unrealized, and we are not aware of any reports of harm to or legal action from patients accessing their mental health notes.
Following implementation, more primary and specialty care clinicians agreed that sharing notes with patients online was beneficial overall. Fewer had concerns about more time needed for office visits or documentation. Most thought patients would worry more and reported being less candid in documentation.
This study provides timely information on policy and training recommendations derived from a wide range of international experts on how to prepare clinicians and patients for open notes in mental health. The results of this study point to the need for further refinement of exemption policies in relation to sharing mental health notes, guidance for patients, and curricular changes for students and clinicians as well as improvements aimed at enhancing patient and clinician-friendly portal design.
Surveys show that clinicians worry that patients with mental health diagnoses will become anxious, confused, or upset after reading their visit notes. In this study, we examined how patients with a mental illness diagnosis who read at least 1 clinical note in the last 12 months perceived how reading the note affected their adherence to prescribed medication.
About half of patients and families who perceived a serious mistake in their notes reported it. Identified barriers demonstrate modifiable issues such as establishing clear mechanisms for reporting and more challenging issues such as creating a supportive culture. Respondents offered new ideas for engaging patients and families in improving note accuracy.
Open anesthetic records may empower patients. Armed with previous anesthetic records, patients may be better prepared to communicate prior adverse events or side effects. We may also see more patients who seek the same “cocktail” of anesthetics that were provided to them in the past or may ask for the same anesthesia providers who have cared for them. Overall, patients should be able to better communicate their satisfaction or dissatisfaction with prior anesthetic experiences. Anesthesia providers will also have access to a wealth of important information, like airway management details, from prior out-of-network anesthetic records.
Although limited by relatively low survey response rate, OpenNotes was well-received by parents of pediatric patients without untoward consequences. The main concerns pediatricians raise about OpenNotes proved to not be issues in the pediatric population. Our results demonstrate clear benefits to adoption of OpenNotes. This provides reassurance that the transition to sharing notes with pediatric patients can be successful and value additive.
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.
In an effort to foster patient engagement, some healthcare systems provide their patients with open notes, enabling them to access their clinical notes online. In January 2013, the Veterans Health Administration (VA) implemented online access to clinical notes (“VA Notes”) through the Blue Button feature of its patient portal.