Our data demonstrate variability in the use of a confidential note type across specialties, patient ages, and types of confidential information. This note type is frequently utilized by a subset of providers who often manage sensitive patient and parent information. As vendors and institutions enable open notes, thoughtful implementation and provider education surrounding the use of this confidential feature is needed.
Ethics
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.
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.
Empowering patients and reducing inequities: is there potential in sharing clinical notes?
Patients who read their clinical notes via online patient portals (‘open notes’) report that doing so engages them actively in their care, improves their sense of control over their health and enhances safety. In several surveys, patients who are older, less educated, non-white or whose first language is not English report even greater benefits than do their counterparts. However, for many reasons, persons from these demographic groups are less likely to use health portals than other patient populations.
Sharing notes with mental health patients: balancing risks with respect
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 as diagnostic collaborators: Sharing visit notes to promote safety and accuracy
Error resulting from missed, delayed, or wrong diagnoses is estimated to occur in 10–15% of ambulatory and inpatient encounters, leading to serious harm in around half of such cases. When it comes to conceptualizing diagnostic error, most research has focused on factors pertaining to: (a) physician cognition and (b) ergonomic or systems factors related to the physician’s working environment. A third factor – the role of patients in diagnostic processes – remains relatively under-investigated. Yet, as a growing number of researchers acknowledge, patients hold unique knowledge about themselves and their healthcare experience, and may be the most underutilized resource for mitigating diagnostic error. This opinion article examines recent findings from patient surveys about sharing visit notes with patients online. Drawing on these survey results, the authors suggest three ways in which sharing visit notes with patients might enhance diagnostic processes: (1) avoid delays and missed diagnoses by enhancing timely follow up of recommended tests, results, and referrals; (2) identify documentation errors that may undermine diagnostic accuracy; and (3) strengthen patient-clinician relationships thereby creating stronger bidirectional diagnostic partnerships. The authors also consider the potential pitfalls or unintended consequences of note transparency, and highlight areas in need of further research.
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