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.
Health Policy
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.
A patient-centered documentation skills curriculum for preclerkship medical students in an open notes era
We developed this session for first-year medical students within their foundational clinical skills course to place bias-free language at the forefront of how they learn to construct a medical note. While the longitudinal impact remains to be seen, it is clear patient-centered documentation skills should be an integral part of documentation education.
21st Century Cures Act ONC Rule: Implications for adolescent care and confidentiality protections
This article reviews the key aspects of confidentiality protections in adolescent health care, explains the ONC Rule, outlines clinical, HIT, and equity challenges associated with its implementation, encourages the development of policies protecting the confidentiality of adolescents’ EHI [ … ] and offers tools for analyzing key questions in individual cases and practical steps to address the confidentiality of EHI with patients and parents.
Clinical ethics consultation documentation in the era of open notes
The new regulatory requirements of the 21st Century Cures Act provide a valuable opportunity to involve patients more actively in the documentation and telling of their own story of ethical complexity. Healthcare systems should take advantage of this new era and use open notes as a way to improve CECs documentation and, ultimately, patient care.
Experiences with information blocking in the United States: A national survey of hospitals
We sought to describe hospital leaders’ perceptions of the prevalence of practices that may constitute information blocking, by actor and hospital characteristics, following the rule’s applicability date. These results […] support the need for continued observation to provide a sense of the prevalence of information blocking practices and for education and awareness of information blocking regulations.
Patient access to full general practice health records
Researchers in the UK say patients have little choice but to be more self-reliant due to overwhelming demands on the health system. Ready online access to full health records could help and may also reduce demand.
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