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.
Oncology
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.
Chaplains’ Charting in the USA in the Era of “Open Notes:” Recommendations from a Quality Improvement Project
This paper addressed the particular needs of chaplains in oncology settings where relationships tend to be longer. It recommends using strengths-based language, avoiding language that suggests disbelief, shortening notes, and using documentation to extend spiritual care.
A Proof-of-Concept Study for Patient Use of Open Notes with Large Language Models
Can AI chatbots help patients make sense of their medical notes? This first-of-its-kind study published in JAMIA Open finds that with the right prompt, large language models may become powerful partners in understanding complex health information.
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.
Overcoming systemic barriers to make patient-partnered research a reality
This commentary explores the barriers posed by processes of consent, data exchange, and EHR interoperability that hinder how researchers honor patients’ desires to contribute to the advancement of cancer research. To grow a thriving research ecosystem, we should minimize participants’ burden and develop systems that demonstrate our commitment and respect for their wishes to contribute to cancer research.
Identifying research priorities and essential elements of palliative care services for people facing malignant brain tumors: A participatory co-design approach
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.
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.
Understanding the Cures Act Information Blocking Rule in cancer care: A mixed methods exploration of patient and clinician perspectives and recommendations for policy makers
Patients with cancer and their cancer care teams want the ability to tailor information release based on individual preferences and goals. Understanding how to tailor implementation of the Information Blocking Rule is essential for retaining its benefits and minimizing unintended harm for patients with cancer.
Deciding on my dimples
OpenNotes advocate/researcher Liz Salmi describes a high-stakes decision she made in collaboration with her neurosurgeon during awake craniotomy.
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