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.
News from OpenNotes
OpenNotes Welcomes First Chief Innovation Officer: Om Lala, MD, MBA, MPhil
Lala: “OpenNotes is uniquely positioned to help society harness the immense benefits that come with people having easier access to their medical records.”
Tom Delbanco, MD, MACP, to receive national award from the American College of Physicians
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.
Open Results: Patients overwhelmingly prefer immediate access to test results, even when the news may not be good
In a recent multisite survey of more than 8,000 patients who accessed their test results via an online patient portal account, researchers found that users overwhelmingly supported receiving the results immediately, even if their provider had not yet reviewed them.
Webinar Recording & Resources – Getting It Write: What To Do Now That Patients In England Can Read Their GP Notes
While open notes have been the “law of the land” in the United States for more than a year, in England, adult patients accessing care through the National Health Service (NHS) will for the first time have access to their primary care record online starting Nov. 1, 2022. In this webinar, we will discuss what this development means for patients and GP staff in England.
OurNotes for Care Partners Pilot Launches
Care partners are a critical, though informal, part of the healthcare system but are often not well supported by formal structures. OurNotes for Care Partners aims to identify care partners, assess their needs, and offer practical resources to alleviate stress and offer support through the Caregiver Intensity Index.
Patient researchers lead the way
This work is in and of itself important. But we’re excited also by the transparent, collaborative partnership that Lewis formed with traditional/academic investigators. It offers a glimpse into the future evolution of important healthcare scholarship. Both the leadership and design principles behind the CREATE Trial signal a remarkable change in the culture of research.
Fall Meeting: Shared Access to the Patient Portal for Older Adults
OpenNotes is working on patient portal based solutions to help care partners & older adults get the information they need. We’re excited to invite other collaborators to join us in this effort.
Coalition for Care Partners: New initiative to support care partners through health information technology
An interdisciplinary group of colleagues and affiliate organizations are launching the Coalition for Care Partners: Connecting Care Partners to the Care Team Through Health Information Technology, a new effort to build knowledge and tools directed at strengthening health system capacity to systematically identify, engage, and support care partners in care delivery.
Information Blocking Rule includes ePHI starting October 2022
Starting on October 6, 2022, the definition of electronic health information (EHI) in the 21st Century Cures Act will expand beyond the United States Core Data for Interoperability (USCDI) Version 1 to all electronic Protected Health Information (ePHI) that a patient has the right to access under the Health Insurance Portability and Accountability Act (HIPAA).…