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.
Salmi, Liz
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.
Sharing clinical notes, and placebo and nocebo effects: Can documentation affect patient health?
This paper connects findings from the field of placebo studies with research into patients’ interactions with their clinician’s visit notes, housed in their electronic health records, and proposes specific hypotheses about how features of clinicians’ written notes might trigger mechanisms of placebo and nocebo effects to elicit positive or adverse health effects among patients. Bridging placebo studies with (a) survey data assaying patient and clinician experiences with portals and (b) randomized controlled trials provides preliminary support for our hypotheses. The paper concludes with actionable proposals for testing the understanding of the health effects of access to visit notes.
Harnessing the Consumer Movement
In this issue, an American College of Physicians (ACP) position paper on Principles for Patient and Family Partnership in Care moves beyond longstanding rhetoric urging clinicians to become more “patient-centered” and calls for an aggressive turn toward true partnership (1). The ACP recommends that patients and families work closely with clinicians to improve medical education and health care systems. The paper cites ample evidence that such partnerships benefit patients and clinicians alike and argues that attention to dignity and respect may improve health outcomes, adherence to care plans, efficiency, and patient and clinician satisfaction.
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