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.
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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.
OpenNotes Celebrates Dr. Catherine M. DesRoches on Appointment as John F. Keane & Family Associate Professor of Medicine at Harvard Medical School
Dr. DesRoches’ appointment reflects decades of scholarship and leadership dedicated to making health information more accessible, understandable, and useful for patients and care partners.
Introducing a New OpenNotes Resource: How to Use Artificial Intelligence (AI) and Large Language Models (LLMs) To Understand Your Health Information
This resource offers accessible information about AI, large language models (LLMs), and open notes.
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.
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.
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.
Gaps in the coordination of care for people living with dementia
This study examines care coordination breakdowns reported by patients living with dementia (PLWD) or their care partners. Interventions to improve communication across different care teams are needed to minimize the harmful effects of gaps in care coordination.
Shared access to patient portals for older adults: Implications for privacy and digital health equity
This viewpoint article discusses challenges and opportunities of systematic engagement of care partners through shared access to the patient portal that have been amplified in the context of the COVID-19 outbreak and recent implementation of federal information blocking rules to promote information transparency alongside broader shifts toward care delivery innovation and population aging. We describe implementation considerations and the promise of granular, role-based privacy controls in addressing the nuanced and dynamic nature of individual information sharing preferences and fostering person- and family-centered care delivery.
Negative Patient Descriptors: Documenting Racial Bias In The Electronic Health Record
We found that Black patients at an urban academic medical center had disproportionately higher odds of negative patient descriptors appearing in the history and physical notes of their EHRs compared with White patients. This difference may indicate implicit racial bias not only among individual providers but also among the broader beliefs and attitudes maintained by the health care system. Such bias has the potential to stigmatize Black patients and possibly compromise their care, raising concerns about systemic racism in health care.
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