OpenNotes faculty and scholars conduct research and collaborate with investigators around the world to understand the effects of fully transparent medical care on communication, engagement, safety, costs, and the overall quality of care. Below you can review work conducted by OpenNotes faculty and scholars, often joined by colleagues from a wide variety of settings in the US and beyond.
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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.
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.
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.
Patients overwhelmingly report understanding their visit notes and usually find them accurate, with few disparities according to sociodemographic or health characteristics. They have many suggestions for improving their quality, and if they understand a note poorly or find inaccuracies, they often have less confidence in their clinicians.
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.
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.
Care partners value having access to their loved one’s information. The patient portal is a convenient way to access test results and clinical notes, communicate with health care practitioners, and link care partners to the clinical team, making it a powerful tool for realizing the goals of care.
Evidence suggests that the practice of sharing clinicians’ notes with patients via online patient portals may increase patient engagement and improve patient–clinician relationships while requiring little change in providers’ workflow. Authors examined clinical social workers’ experiences and attitudes related to open psychotherapy notes using focus groups and telephone interviews.
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 who read their clinical notes via online patient portals (‘open notes’) report that doing so engages them actively in their care, improves their sense of control over their health and enhances safety. In several surveys, patients who are older, less educated, non-white or whose first language is not English report even greater benefits than do their counterparts. However, for many reasons, persons from these demographic groups are less likely to use health portals than other patient populations.