This invited commentary examines how patients receive serious test results through electronic portals, particularly a new cancer diagnosis. Rather than imposing universal delays, our authors call for better research, flexible release options, anticipatory guidance, and patient-controlled notifications that respect individual preferences for when, where, and how life-changing information is received.
Editorial / Commentary
An Agenda to Support Care Partner Engagement Through the Patient Portal
In this commentary for NEJM Catalyst, Wolff and DesRoches offer a roadmap for advancing patient portal policies and practices that better support care partners as essential members of the care team. The article reviews the current landscape of care partner access through patient portals, and outlines a research, policy, and practice agenda.
Resuscitating Primary Care: A Triad of Patient, Clinician, and AI Coach
This opinion in the American Academy of Family Physicians (AAFP)’ Family Practice Management (FPM) paints a picture of what the future of care might look like. Two fictional vignettes use an AI coach as a way of bridging the time before a patient can next see their clinician and a way for both parties to review notes from their meeting.
Designing for Techquity: Ensuring Open Notes Serve All Patients
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.
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.
Sliver of Hope
In this narrative medicine essay, a transplant nephrologist relates how his reticence to tell a patient that her worsening health status rendered her ineligible for a transplant strengthened his resolve to better communicate bad news with his patients.
Whom Should We Regard as a Legitimate Stakeholder in the Accuracy of Information in a Patient’s EHR?
This case describes a care partner who was distressed by bias and inaccuracies in a loved one’s medical notes. Steve O’Neill LICSW, BCD, JD and Catherine M. DesRoches, DrPH, MSc offer guidance on how the doctors and hospital should respond.
Near-wins in the pursuit of quality: does transparency matter if no one is looking?
In this new editorial for BMJ Quality & Safety, Sigall Bell, MD and Cait DesRoches, DrPH reflect on how access to medical notes can improve the quality of care, but only if patients are able to read and understand them. In the time between medical visits, when patients are monitoring their own health, AI may open a new frontier.
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.
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.
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