Patients and their care partners are usually the first to notice new or changing symptoms and are the connecting “thread” between different healthcare encounters. In this article Sigall Bell, Fabienne Bourgeois, Stephen Liu, and Eric Thomas—along with patient partners Betsy Lowe and Liz Salmi—describe the co-development of an online tool called “OurDX” (Our Diagnosis) to engage patients and families in the diagnostic process
Editorial / Commentary
In this personal blog, the author discusses the harmful consequence of “closed notes” – of denying patients rapid access to their online clinical information. The blog post describes “closed notes” as an inherited structure in healthcare but urges that this does not make it right.
The peer review template for patients and novice reviewers is a series of steps designed to create a workflow for the main components of peer review. While relatively novel, patient peer review has the potential to change the healthcare publishing paradigm. It can do this by helping researchers enlarge the pool of people who are welcome to read, understand and participate in healthcare research. Academic journals who are early adopters of patient peer review have already committed to placing a priority on using person-centred language in publicly available abstracts and focusing on translational and practical research.
Open notes are now the norm in mental health care in the U.S. Despite clinician concerns, early experiences suggest that patients and clinicians stand to benefit from embracing this change. Future studies should investigate using open notes as a clinical intervention while incorporating core processes of experiential therapies. ACT provides a framework for using open notes as a clinical tool in mental health care.
The OpenNotes era has ushered in the possibilities of greater patient and family collaboration in shared decision-making and reduced barriers to documentation sharing. However, it has raised new ethical and clinician documentation considerations. In addition to clinician education, patients and families could benefit from education around the purpose of clinical documentation, how to utilize OpenNotes, and the benefits of engaging in dialogue regarding the content and tone of documentation.
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.
In Germany, patients’ rights to access their health information has been enshrined in the Civil Code since February 2013. The right to “inspect medical records” in § 630 g states “The patient is on request to be permitted to inspect the complete medical records concerning him/her without delay to the extent that there are no considerable therapeutic grounds or third party rights at stake to warrant objections to inspection. The patient can also request electronic duplicates of the medical records.”
Tom Delbanco, MD, will never forget his “aha!” moment, even though it was nearly 50 years ago.
The patient sitting across from him had been referred to Delbanco for evaluation of hypertension. But Delbanco thought the man’s symptoms suggested he consumed more alcohol than he’d acknowledged.
Delbanco considered adding alcohol misuse to the patient’s “problems list,” but he stopped writing after realizing that the patient, a printer who set type by hand, was reading his notes upside down. Delbanco explained why he had stopped writing and informed the patient that he suspected he drank more than 2 beers a day. If that was the case, Delbanco added, it should be noted on his chart.
In the last decade, many health organizations have embarked on a revolution in clinical communication. Using electronic devices, patients can now gain rapid access to their online clinical records. Legally, patients in many countries already have the right to obtain copies of their health records; however, the practice known as “open notes” is different. Via secure online health portals, patients are now able to access their test results, lists of medications, and the very words that clinicians write about them. Open notes are growing with most patients in the Nordic countries already offered access to their full electronic record. From April 2021, a new federal ruling in the United States mandates—with few exemptions—that providers offer patients access to their online notes.
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.