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.
Editorial / Commentary
The information blocking (IB) prohibition component of the 21st Century CURES Act (21CCA) comes into effect April 5, 2021, which gives patients and their families near instant access to almost all clinical notes, lab results, and health data. … A committee of pediatric gastroenterologists reviewed the 21CCA regulation and compared local practice policies. Pediatric practitioners need to understand how age will affect local information release policies and to know which note types are released, paying special consideration to trainee notes and confidential information. Extraneous detail should be removed from notes, emotional labeling be avoided, and objective statements be made when referring to the care of other providers. Awareness of the 21CCA provides pediatric gastroenterologists with the opportunity to adapt their medical documentation practices to accommodate the new law.
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.
Patients report understanding what they read, and few take issue or pose subsequent questions. When they do, concerns are often warranted. Indeed, when it comes to safety, two eyes on one record can be far more helpful than two eyes perusing 1,000 records. One in five patients report that they find an error, 40% of which they consider serious. Among doctors inviting patients to read their notes for more than a year, 25% reported patients describing errors that they, the doctors, judged serious. Given the potential for finding mistakes early and preventing subsequent harm, among attorneys, patients, and doctors themselves there is consensus that litigation in the aggregate may well decrease. We know of no instances so far of litigation resulting from what a patient read in a note. Patients report that open notes build trust, and positive relationships promote forgiveness, even if mistakes are made.
Doctors are learning about new rules coming this April that encourage open and transparent communication among patients, families, and clinicians. The rules, putting into effect the bipartisan 21st Century Cures Act, mandate offering patients access to notes (“open notes”) written by clinicians in electronic medical records. … We believe that clinicians should embrace the spirit of the rules and view them also as HIPAA catching up with a computerized universe. As the new practice takes hold, ambiguities will diminish as further experience and research evolve. Warner Slack, the first doctor to ask patients to talk to computers, opined that patients are the “largest and least utilized resource in healthcare.” Open and transparent communication through electronic medical records may mobilize patients (and their families) far more effectively. Patients will almost certainly benefit. Remembering Slack’s prophecy, we believe that clinicians will too.
A variety of surveys have been conducted into patients’ and doctors’ experiences of open notes but much less is understood about the objective changes in documentation that may arise as a result of patient access. We review current research into open notes including clinicians’ reports on how they have modified their notes as a result of implementing the practice. Highlighting the potentially beneficial and harmful effects that different types of documentation changes might have on the therapeutic relationship and on patient outcomes, we argue that more research is needed to investigate objective changes in notes as a result of patient access.
Patient portals are used as a means to facilitate communication, performing administrative tasks, or accessing one’s health record. In a retrospective analysis of real-world data from the Swedish National Patient Portal 1177.se, we describe the rate of adoption over time, as well as how patterns of device usage have changed over time. In Jan 2013, 53% of all visits were made from a computer, and 38% from a mobile phone. By June 2020, 77% of all visits were made from a mobile phone and only 20% from a computer. These results underline the importance of designing responsive patient portals that allow patients to use any device without losing functionality or usability.
Against the current shortcomings with disclosure practices in psychotherapy, healthcare is becoming more transparent and “open notes” —inviting patients to read their clinical notes via online portals—is a growing movement. Numerous health institutions in over a dozen countries have begun to share the health records with patients (5). In the USA, from November 2020, new federal rules mandate, with few exceptions, the sharing of medical notes; psychotherapy notes remain exempt from this ruling (6). Although fewer health organizations have chosen to share mental health notes (7), all patients have the right to understand their care (8). While many clinicians anticipate workflow problems from sharing notes (9, 10), studies suggest that clinicians do not experience major burdens to documentation practices (11–13).
Addressing the perceived challenges with informed consent processes in psychotherapy contexts, we propose that open notes may provide an important new strategy to strengthen patient autonomy and improve clinical outcomes without sacrificing professional autonomy.
On 2 November 2020, new federal rules will implement the bipartisan 21st Century Cures Act that, in part, “. . . promotes patient access to their electronic health information, supports provider needs, advances innovation, and addresses industry-wide information blocking practices” (1). The rules forbid health care organizations, information technology vendors, and others from restricting patients’ access to their electronic health care data, or “information blocking” (Table). Although the Health Insurance Portability and Accountability Act gave patients the legal right to review their medical records, the new ruling goes further by giving them the right to access their electronic health records rapidly and conveniently . . .
… as Blease and colleagues point out in their article, the cloak that effectively covers many notes will be lifted on 2 November 2020, when the 21st Century Cures Act is implemented and patients are to have ready access to their medical record, including the clinical notes. Patients often misunderstand medical jargon. Will reading notes cause them confusion and distress? Physicians are already experiencing burnout from spending hours at the end of the day completing documentation for the electronic health record. Will writing notes with the realization that the patient may be reading them be one more burden for physicians?