Malignant brain tumors (brain cancer) significantly affects the quality of life (QoL) of patients and their care partners, particularly in areas like cognition and communication. This study aimed to find out the top research priorities for palliative care in brain cancer using a collaborative, community-driven approach.
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Picker Adventures: Peering through a 55-year retrospectoscope with Tom Delbanco, MD
What links “the world’s most beautiful” violin, a schloss in Salsburg, and a bank president who curses a lot? All are covered in this inspiring talk from Picker’s founding Chair, Dr. Tom Delbanco, who traces his own 55-year career, the development of person centered care, and the roots of the Picker Institute.
Advocating for Healthcare Transparency at an International Scale
In the presentation, Liz Salmi discusses the transformative impact of the OpenNotes initiative, beginning with a 2012 study showing significant benefits for patients and care partners and no major changes for clinicians, and concludes with the impact of the 21st Century Cures Act in the U.S., which vastly expanded patient access to their medical information.
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.
When bad news comes through the portal: Strengthening trust and guiding patients when they receive bad results before their clinicians
In this chapter, perspectives from a patient with cancer, an oncologist, and a cancer psychiatrist (in that order) are shared to illuminate the adjustments made in clinician-patient communication amid the era of nearly instantaneous results within the electronic health record.
New curriculum helps medical students learn bias-free language for clinical notes
Using a multipart approach, a novel “open notes” curriculum prepares the next generation of learners to employ clinical notes as a tool to communicate with patients and providers, and introduces key ethical considerations on how documentation can enhance or harm therapeutic relationships with patients.
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.