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?
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.
In the past decade, health institutions in over ten countries—including Australia, Canada, Sweden, and the USA—have begun to provide patients with access to their clinical records via secure online portals. So far, however, few health organisations have chosen to share clinical notes written by mental health professionals. Clinicians, especially those working in psychiatric settings, remain concerned that patients could become anxious, confused, or offended by what they read, and that sharing notes will create an extra work burden for mental health professionals.
Patients have unprecedented online access to their medical records. More than 6 million Americans can now read their doctors’ notes via patient portals, and continued rapid growth is likely. Sharing notes with patients may yield important health benefits, including increased patient empowerment and improved medication adherence. Seeing written information, including notes, helps patients remember the plan of care, reinforces patients’ positive behaviors, and strengthens the patient–doctor alliance.
Millions of patients are accessing their medical records online via secure electronic patient portals. They are also increasingly uploading data directly into their records, and many clinicians now offer patients ready and ongoing access to the notes that document encounters. In response, patients report improved understanding of their care, better recall, enhanced adherence to care plans, and an increased sense of control over their health.
Patient and family engagement is gaining attention as a priority in patient care1 and medical education.2 OpenNotes, an innovation that invites patients to read their visit notes through a secure online portal, has demonstrated several health benefits.3 Over five million U.S. patients have online access to their notes today; shared visit notes may not only engage patients in care but also open the door to new educational innovations.
Intrigued by the idea of patient/family feedback on visit notes, our research team asked residents and their supervisors whether such feedback would be helpful.4 In surveys and focus groups, many agreed it would be.
As soon as the elevator door closed, the tears gave way, and I walked home with my head down … thoughts of my mistakes running rampant.
So began the reflection of a third-year medical student, who described falling short of his residents’ expectations on a history and physical examination. The crucial flaw? He had taken too long. His reflection continued:
[The next day], an elderly patient, traction stockings covering her small, dark brown legs, shuffled toward me. She stopped directly in front of me, her delicate, slightly stooped frame supported by her thin hand, grasping the IV pole. “Young man,” she said, “I heard you speaking to the patient in the bed next to me [last night]. And I just wanted you to know that I’m just so proud of you.… How you spoke to that patient with such care and intelligence. I’m just so proud.”
We congratulate Martin1 on his thoughtful description of how he has opened clinical notes to his patients. We write in response from two perspectives. One of us (D.deB.) is a patient who has become active in the world of patient engagement,2 a switch in careers triggered by widely metastatic renal carcinoma, now in remission for several years thanks to superb care by physicians and nurses in primary care and oncology. The second author (J.W.) is one of the leaders of the OpenNotes initiative3 and a health services researcher, with a background in nursing. We touch first on several points that draw on a growing national experience with fully transparent medical records and then offer the perspective of a patient and consumer advocate.