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.
Health Policy
Which Patients With Cancer Access Their Clinical Notes? A Disparities Analysis
Although clinician notes are now available to all patients, many of the most vulnerable populations are less likely to read them. This study tracks how ethnicity, race, and language impact who is opening their notes at a high-volume specialty cancer center.
People Overtrust AI-Generated Medical Advice despite Low Accuracy
This article presents an analysis of how artificial intelligence (AI)–generated medical responses are perceived and evaluated by nonexperts. The increased trust placed in inappropriate AI-generated medical advice can lead to misdiagnosis.
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.
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.
Shared access to adults’ patient portals: A secret shopper exercise
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.
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.
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.
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