Cait DesRoches and Liz Salmi reflect on the evolution of open notes and issue a clear call to action for oncology. Drawing on over fifteen years of research, they underscore that while open notes consistently strengthen trust, understanding, and patient engagement, access is not equitable. They argue that transparency without equity is incomplete.
Salmi, Liz
Intimate Partner Violence and Open Notes: Challenges and Opportunities
This piece offers practical guidelines for documenting IPV in trauma-informed, patient-centered ways, while navigating transparency requirements under the Cures Act. It acknowledges proxy access features and risks, but focuses on how OpenNotes can be used safely to empower survivors and build trust.
Solutions for Increased Adoption of Patient Portal Shared Access: A Human-Centered Design Approach Using the Double Diamond Model
Using a human-centered design approach, OpenNotes and researchers at the Johns Hopkins Bloomberg School of Public Health explored how to improve awareness and adoption of shared access to patient portals for older adults and their care partners.
Critical AI Health Literacy as Liberation Technology: A New Skill for Patient Empowerment
As artificial intelligence transforms health care, patients are increasingly using generative AI to question, reinterpret, and even resist institutional decisions. This provocative commentary, from Hugo Campos and Liz Salmi, introduces “Critical AI Health Literacy” as a new skill set for patients seeking agency and equity in the digital age of medicine.
Hospitalized patient portal access in the post-information blocking rule era
This single-center, cross-sectional observational study highlights low patient portal utilization among hospitalized patients and disparities in access based on race/ethnicity, gender, age, and insurance status.
Users’ perspectives on a demonstration to increase shared access to older adults’ patient portals
As shared access uptake remains low, the Coalition for Care Partners, and three healthcare delivery organizations, co-designed an initiative promoting shared access to the patient portals of older adults.
A Proof-of-Concept Study for Patient Use of Open Notes with Large Language Models
Can AI chatbots help patients make sense of their medical notes? This first-of-its-kind study published in JAMIA Open finds that with the right prompt, large language models may become powerful partners in understanding complex health information.
Repeated Access to Patient Portal While Awaiting Test Results and Patient-Initiated Messaging
A new study found that patients often refresh the portal while awaiting test results—especially for routine tests. This behavior is linked to increased messaging, suggesting that individual worry may drive communication more than the test itself.
Robert F Kennedy Jr’s proposal to remove public commentary from US health policy is a threat to science and public health
In a recent BMJ opinion, OpenNotes leaders warn that a proposal by U.S. health secretary Robert F. Kennedy Jr. to eliminate public comment in federal health policymaking threatens transparency, public trust, and democratic values.
Advancing cancer care through digital access in the USA: a state-of-the-art review of patient portals in oncology
Patient portal use among patients with cancer has increased significantly in recent years. This state-of-the-art review seeks to address and analyse literature involving patient portal use by patients with cancer and their care partners.
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