This study investigated the hospital discharge process for palliative care patients and their caregivers, focusing on its patient-centeredness, discharge readiness, and links to readmissions.
Patient Experience
Diagnosis in the Era of Digital Health and Artificial Intelligence: Proceedings of a Workshop—in Brief
How might AI, digital health technologies, and open notes transform diagnosis while addressing health disparities? Read highlights from the National Academies Forum on Advancing Diagnostic Excellence.
Guidelines for Patient-Centered Documentation in the Era of Open Notes: A Qualitative Study
This study by Vanka, et al, presents 10 guidelines for patient-centered medical documentation, emphasizing respect, clarity, and inclusivity in clinical notes. These principles aim to empower patients, improve trust, and enhance medical education on open notes practices.
Clinician and patient perspectives on the exchange of sensitive social determinants of health information
The findings of this study suggest that a multifaceted approach, taking both patients’ and clinicians’ concerns and preferences into account, is needed to improve the collection, documentation, and exchange of SDOH data to benefit both direct patient care and broader efforts at improving public health.
Study: Leveraging a patient portal to help patients formulate their healthcare goals
This study tested self-directed tools for older adults with chronic conditions to identify healthcare priorities. Website engagement was low, but 26% completed an Epic previsit questionnaire. Most found it helpful, and physicians noted it facilitated end-of-life care discussions.
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.
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.
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.
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.
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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