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.
Health Policy
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.
Consumers Gaining Ground in Health Care
At long last public and private initiatives are on the verge of giving consumers more information and more fair opportunities when it comes to obtaining health insurance and health care, reducing the uneven care and dysfunctional financing that have long plagued the health care system in the United States.
The Affordable Care Act (ACA) is recasting the marketplace for health insurance, allowing consumers who shop on their own to make more informed choices among a better selection of health plans. Health insurers must now play by a different set of rules. Consumers with preexisting conditions are no longer denied insurance. The products for sale are more standardized, and important loopholes such as misleading out-of-pocket maximums have been closed. Private plans can be compared on an apples-to-apples basis using a new Summary of Benefits and Coverage form that standardizes the way coverage is described no matter which company or organization is offering it.
Interval Examination: Moving Toward Open Notes
Despite periodic efforts over almost 5 decades, the idea of having patients review and contribute to their medical records has failed to take hold, even though such practice might engage patients more actively in maintaining their health and managing their care and might also improve quality of care and patient safety. Contemporary trends toward increased transparency, accompanied by evolving health information technologies, provided an opportunity for us to conduct a study examining the effects on both patients and primary care physicians (PCPs) of inviting patients to read their doctors’ visit notes. Bolstered by encouraging findings from this study, and with the goal of informing those who might join in further inquiry, we outline in this “interval examination” challenges we are encountering and strategies we are employing as we explore wider implementation of this practice.
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