Our secret shopper exercise unveiled noteworthy variability in the experiences of 18 individuals attempting to grant or receive shared access to the patient portal, highlighting multiple barriers and facilitators to shared access. The findings underscore the imperative for cross- and intra-organizational collaboration aimed at learning from the diverse experiences of patients, care partners, clinicians, and staff, and disseminating best practices.
Patient Experience
Overcoming systemic barriers to make patient-partnered research a reality
This commentary explores the barriers posed by processes of consent, data exchange, and EHR interoperability that hinder how researchers honor patients’ desires to contribute to the advancement of cancer research. To grow a thriving research ecosystem, we should minimize participants’ burden and develop systems that demonstrate our commitment and respect for their wishes to contribute to cancer research.
Patients need access to their medical records—now
Despite initial professional resistance and policy delays, countries like Denmark, Estonia, Sweden, and the US have demonstrated that the benefits of full record access outweigh the risks. Patients globally are calling for interactive, user-friendly portals to access and correct their medical records, emphasizing that this is crucial for self-care, particularly in the post-pandemic era where healthcare access has declined.
Identifying research priorities and essential elements of palliative care services for people facing malignant brain tumors: A participatory co-design approach
Malignant brain tumors (brain cancer) significantly affects the quality of life (QoL) of patients and their care partners, particularly in areas like cognition and communication. This study aimed to find out the top research priorities for palliative care in brain cancer using a collaborative, community-driven approach.
Patient portals fail to collect structured information about who else is involved in a person’s care
“Shared access” uses separate identity credentials to differentiate between patients and care partner portal users. EHR vendors must recognize that both patients and care partners are important users of their products and acknowledge and support the critical contributions of care partners as distinct from patients.
When bad news comes through the portal: Strengthening trust and guiding patients when they receive bad results before their clinicians
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.
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.
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