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.
Salmi, Liz
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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