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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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.” The rules forbid health care organizations, information technology vendors, and others from restricting patients’ access to their electronic health care data, or “information blocking.” 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 via secure online portals. Providers must share not only test results, medication lists, and referral information but also the notes written by clinicians. Over the past decade, this practice innovation—known as “open notes”— has spread widely, and today more than 50 million patients in the United States are offered access to their clinical notes. As the rest of U.S. clinicians prepare for change, we ask: What has been learned about this practice, and what remains uncharted territory?
… 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?
Beginning November 2, 2020, opening clinical notes to patients with cancer will no longer be a decision left to individual clinicians or institutional preference but rather a requirement, as a result of the 21st Century Cures Act Interoperability and Information Blocking Rule. The rule requires patients to be provided access to all health information in their electronic medical records, including progress notes (aka “open notes”). Cancer patients and their families face serious quality of life and information burdens that may be alleviated through access to notes. Earlier work has shown differences between clinician and patient attitudes after open notes implementation, but there has been no investigation into how oncology clinician views differ from those of their patients.
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.