In this chapter, perspectives from a patient with cancer, an oncologist, and a cancer psychiatrist (in that order) are shared to illuminate the adjustments made in clinician-patient communication amid the era of nearly instantaneous results within the electronic health record.
Patient Experience
Family perception of OpenNotes in the neonatal intensive care unit
At the end of the NICU discharge education, completed in the patient portal before discharge, families were offered an anonymous survey on OpenNotes. To the authors’ knowledge, this is the first study on NICU families’ perceptions of OpenNotes, which indicated positive interactions with the doctors’ daily progress notes and gave important suggestions for improvement.
Adolescent access to clinicians’ notes: Adolescent, parent, and clinician perspectives
This study aims to identify adolescent, parent, and clinician perspectives on the anticipated benefits and concerns of giving adolescents access to clinicians’ notes and strategies to support note-sharing in this population. These strategies may reinforce the potential benefits and mitigate the challenges of sharing notes with adolescent patients.
Users’ experiences with online access to electronic health records in mental and somatic health care: Cross-sectional study
[…] This study aimed to provide insight into the impact of PAEHR [patient-accessible electronic health records] on patient care, particularly for those with mental health conditions, and to inform clinical strategies to improve the use of PAEHR in health care settings. The transition toward EHR accessibility may present health care professionals with a unique opportunity to change how they think and write about patients.
Co-designing an initiative to increase shared access to older adults’ patient portals: Stakeholder engagement
We partnered with 3 health care organizations to co-design an initiative that aimed to increase shared access registration and use and that can be implemented using existing patient portals. Educational materials are publicly available at Coalition for Care Partners.
Effect of notes’ access and complexity on OpenNotes’ utility
Simplifying notes can improve understanding of notes for patients/families. However, perceived usability, cognitive workload, and satisfaction with even the simplified notes were still low. To make notes more useful for patients and their families, there is a need for dramatic improvements to the overall usability and content of the notes.
Open notes use in psychiatry—The need for multilevel efforts in research and practice
Support for open notes has been bolstered by evidence from a limited pool of early adopters showing that sharing mental health notes could improve indicators of patient-centered care, including patient-rated empowerment, mental health literacy, and therapeutic alliance.
The “Our Words Matter” campaign to reduce stigma and bias in clinical communication: A case report
This case report describes the process of assembling a multidisciplinary team to create an educational campaign with the goal of reducing stigma and bias in the medical record. Campaigns like this one can serve as models for medical and public health professionals who seek to advance health equity.
People with diabetes who read their clinicians’ visit notes: Behaviors and attitudes
People with diabetes want to read their clinicians’ notes, are accessing them at high rates, and report understanding the notes and benefiting from reading them. Clinicians can encourage further engagement by enhancing the readability of notes and discussing the availability of notes with patients.
Access to records: Do open notes work for patients?
Since 2021, Americans have been guaranteed full and immediate access to their own health records. Joanne Silberner asks if this has helped or hindered treatment.
Except where otherwise noted, the content by OpenNotes is licensed under a Creative Commons Attribution 4.0 International License.
