This study evaluated whether implementing open notes at a large academic medical center was associated with changes in measures of the length and readability of progress notes written by hematology/oncology clinicians. After the implementation of open notes, progress notes and A&P sections became both longer and easier to read. This suggests clinician documenters may be responding to the perceived pressures of a transparent medical records environment.
Salmi, Liz
Patients, clinicians and open notes: information blocking as a case of epistemic injustice
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.
Knowledge, power, and patients: The ethics of open notes
But do patients really need access to their health information, or should electronic health records be the sole preserve of physicians? We explore this question using our own case studies.
Open Notes Become Law: A Challenge for Mental Health Practice
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.
Preparing Patients and Clinicians for Open Notes in Mental Health: Qualitative Inquiry of International Experts
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.
New federal rule requires open notes: what do clinicians and patients need to know? Insights and suggestions from a neuro-oncologist, a neurosurgeon, and a person living with a brain tumor
Starting April 5, 2021, a new US federal rule will be implemented as part of the 21st Century Cures Act that in part mandates patients will be able to access their test results, medication lists, referral information, and clinical notes rapidly and conveniently in electronic formats… “without delay.” As a result, it will be easier for patients to access the information in their records, including progress notes. … We know of no specific guidance nor formal study for neuro-oncologists and neurosurgeons on open notes, and there has been no formal study of brain tumor patients’ perceptions. Of 35 US institutions offering accredited neuro-oncology fellowships through the United Council of Neurologic Subspecialties, 26 report the capability of sharing notes with at least some patients, though the method of note sharing is unclear. For now, the authors offer suggestions for information that both neuro-oncology clinicians and patients want at their fingertips, as well as personal reflections on sharing and reading visit notes.
U.S. policy requires immediate release of records to patients: Patients and clinicians should embrace the opportunities
On 5 April a new federal rule will require US healthcare providers to give patients access to all the health information in their electronic medical records without charge. This new information sharing rule from the 21st Century Cures Act of 2016 mandates rapid, full access to test results, medication lists, referral information, and clinical notes in electronic formats, on request. The US is not alone in providing patients with full online access to their electronic health records. In Sweden, patients gained access to their records between 2012 and 2018. Estonian citizens have had full access since 2005. The sharing of personal health information isn’t without precedent in the US: around 55 million people already have access to their online clinical notes, and many more have access to laboratory results and other parts of their records. But for some US clinicians, the new rule may feel like a shock.
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.
Six countries, six individuals: resourceful patients navigating medical records in Australia, Canada, Chile, Japan, Sweden and the USA
In the absence of international standards, widely differing attitudes and laws, medical and social cultures strongly influence whether and how patients may access their medical records in various settings of care. Reviewing records, including the notes clinicians write, can help shape how people participate in their own care. Aided at times by new technologies, individual patients and care partners are repurposing existing tools and designing innovative, often ‘low-tech’ ways to collect, sort and interpret their own health information. To illustrate diverse approaches that individuals may take, six individuals from six nations offer anecdotes demonstrating how they are learning to collect, assess and benefit from their personal health information.
Open notes in cancer care: coming soon to patients
From Nov 2, 2020, new federal laws in the USA mandate that providers must extend open notes to all patients, with a few permitted exemptions. Drawing on findings in oncology settings, this paper outlines what this innovation might mean for patients and oncologists.
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