A growing body of research supports the notion that sharing transparent medical records, including clinical notes with patients, can help to strengthen communication, trust in clinicians, and patient engagement. Patients receiving dialysis may receive particular benefits from this greater transparency due to their increased risk for fragmented care. In the paper, we review the decade of research focused on the effects of sharing clinical notes with patients and the implications for improved engagement and care.
Health Policy
New U.S. Law Mandates Access to Clinical Notes: Implications for Patients and Clinicians
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 . . .
Open Notes in Oncology: Patient versus Oncology Clinician Views
Most oncology clinician views about open notes differ from those of patients. For example, 70% percent of clinicians agreed that open notes are a “good idea,” while 98% of patients endorsed this view. Further, 44% of oncology clinicians believed cancer patients would be confused by notes; just 4% of patients reported feeling confused after reading. Patient and clinician views about open notes in oncology are not aligned, with patients expressing considerably more enthusiasm.
Sharing clinical notes, and placebo and nocebo effects: Can documentation affect patient health?
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 Managing Medications and Reading Their Visit Notes: A Survey of OpenNotes Participants
We examined patients’ perceptions of how note reading affects factors related to medication adherence. In addition, we sought to understand their engagement with online medication lists and their willingness to participate in keeping those lists correct and up to date.
OpenNotes In Teaching Clinics: A Multi-Site Survey of Residents To Identify Anticipated Attitudes and Guidance For Programs
Residents at 4 US institutions reported mixed attitudes about the anticipated effects of open clinical notes. Prior to actually sharing notes with patients, some residents perceived open notes would enhance patient education, engagement, and trust and offer unique opportunities in their own education, while residents also worried about personal workload and overwhelming patients. Most residents reported low frequency and quality of preceptor feedback on their notes. While some resident attitudes mirror faculty physician experiences, unique resident concerns merit focused attention and further research.
A New Chapter in Patient-Centered Care: Sharing the Medical Note?
The 21st century has ushered in a distinct emphasis on patient-centered care in allopathic medicine, as manifested by the increasing implementation of patient-centered medical homes and the frequent use of patient-centeredness in guidelines, health systems, and insurance language (1–5). The overall goal of this movement is to improve communication between physicians and patients, ultimately increasing patients’ engagement in care and improving the shared decision-making process, and thereby increasing their proclivity to follow their physicians’ advice. The costs attributed to nonadherence are staggering, estimated at $290 billion for medication nonadherence alone (6). Efforts to improve this situation are clearly warranted.
Patient access to electronic psychiatric records: A pilot study
This is the first study to implement and assess the impact of patients’ access to psychiatric records in an outpatient setting. Although many questions remain to be studied and a more diverse sample is needed for future research, the potential impact to enhance mental health treatment and the patient-clinician relationship is suggested for selected psychiatric patients. Policy around providing psychiatry patients access to their notes can be informed by reactions of both clinicians and patients.
Transparent Electronic Health Records and Lagging Laws
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.
Family Caregivers and Consumer Health Information Technology
Health information technology has been embraced as a strategy to facilitate patients’ access to their health information and engagement in care. However, not all patients are able to access, or are capable of using, a computer or mobile device. Although family caregivers assist individuals with some of the most challenging and costly health needs, their role in health information technology is largely undefined and poorly understood. This perspective discusses challenges and opportunities of engaging family caregivers through the use of consumer-oriented health information technology. We compile existing evidence to make the case that involving family caregivers in health information technology as desired by patients is technically feasible and consistent with the principles of patient-centered and family-centered care. We discuss how more explicit and purposeful engagement of family caregivers in health information technology could advance clinical quality and patient safety by increasing the transparency, accuracy, and comprehensiveness of patient health information across settings of care. Finally, we describe how clarifying and executing patients’ desires to involve family members or friends through health information technology would provide family caregivers greater legitimacy, convenience, and timeliness in health system interactions, and facilitate stronger partnerships between patients, family caregivers, and health care professionals.
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