Last week, Liz Salmi, a brain tumor patient, health services researcher, and a nationally-recognized patient advocate, delivered a compelling address at the White House Forum on Glioblastoma (GBM) & Diffuse Intrinsic Pontine Glioma (DIPG), underscoring the importance of transparency in healthcare and its positive impact on patients.

Lala: “OpenNotes is uniquely positioned to help society harness the immense benefits that come with people having easier access to their medical records.”

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.

People with diabetes want to read their clinicians’ notes, are accessing them at high rates, and report understanding the notes and benefiting from reading them. Clinicians can encourage further engagement by enhancing the readability of notes and discussing the availability of notes with patients.

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.

Since 2021, Americans have been guaranteed full and immediate access to their own health records. Joanne Silberner asks if this has helped or hindered treatment.

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.

Tom Delbanco, MD, MACP, has been awarded the John Phillips Memorial Award from the American College of Physicians, a national organization of internists. Established by ACP's Board of Regents in 1929, the award is bestowed for outstanding, lifetime work in clinical medicine that has been innovative and/or had a regional or national impact.

The patient's voice [...] and their preferences for care and its outcomes, is too small a part of the electronic health record (EHR). If you are a researcher or innovator, collaborate with patient groups and clinicians to create new ways to capture the patient voice, and to leverage it for good.