OpenNotes & Adolescents: 13 Key Insights for National Adolescent Health Month

How does sharing open notes impact adolescent care? In honor of National Adolescent Health Month™, we're highlighting 13 key insights, spanning ethics, confidentiality, and empowerment, from research over the last eight years. Read more.

Identifying, Engaging, and Supporting Care Partners in Clinical Settings: Protocol for a Patient Portal–Based Intervention

This study aimed to implement a novel patient portal–based intervention to identify, engage, and support care partners in clinical settings. Early results suggest that the intervention could be an easily scalable and adaptable method of identifying and supporting care partners in clinical settings. Open access.

DesRoches CM, Wachenheim D, Ameling J, Cibildak A, Cibotti N, Dong Z, Drane A, Hurwitz I, Meddings J, Naimark J, O'Donnell K, Winger C, Winnay SS, Young J, Wolff JL. Identifying, Engaging, and Supporting Care Partners in Clinical Settings: Protocol for a Patient Portal–Based Intervention. JMIR Res Protoc 2025;14:e66708. doi: 10.2196/66708

Robert F. Kennedy Jr.’s Proposal is a Threat to Science & Public Health

U.S. health secretary, Robert F. Kennedy Jr., wants to eliminate public comment requirements for key decisions in the U.S. Department of Health and Human Services (HHS). With confidence and trust in science and public health already under pressure, we must double down on transparency and public participation in policy decisions, say OpenNotes leaders. Read OpenNotes' opinion piece. (Open access.)

Salmi L, Walker J, Delbanco T, DesRoches CM. Robert F Kennedy Jr’s proposal to remove public commentary from US health policy is a threat to science and public health. BMJ. Published online April 4, 2025. doi:10.1136/bmj.r676 

Repeated Access to Patient Portal While Awaiting Test Results and Patient-Initiated Messaging

A new study found that patients often refresh the portal while awaiting test results—especially for routine tests. This behavior is linked to increased messaging, suggesting that individual worry may drive communication more than the test itself. Open access.

Steitz BD, Turer RW, Salmi L, Suresh U, MacDonald S, DesRoches CM, Wright A, Louissaint J, Rosenbloom, ST. Repeated Access to Patient Portal While Awaiting Test Results and Patient-Initiated Messaging. JAMA Netw Open. 2025;8(4):e254019. doi:10.1001/jamanetworkopen.2025.4019

A Proof-of-Concept Study for Patient Use of Open Notes with Large Language Models

Can AI chatbots help patients make sense of their open notes? This proof-of-concept study finds that with the right prompt, large language models may become powerful partners in understanding complex health information. Open access.

Salmi L, Lewis DM, Clarke JL, Dong Z, Fischmann R, McIntosh E, Sarabu CR, DesRoches CM. A proof-of-concept study for patient use of open notes with large language models. JAMIA Open, Volume 8, Issue 2, April 2025, ooaf021, doi: 10.1093/jamiaopen/ooaf021

Users’ Perspectives on a Demonstration to Increase Shared Access to Older Adults’ Patient Portals

Shared or proxy access aligns with patient- and family-centered care and supports care partners’ legitimacy and identification by clinicians in patient portal interactions. As shared access uptake remains low, the Coalition for Care Partners, and three healthcare delivery organizations, co-designed an initiative promoting shared access to the patient portals of older adults. Open access.

Dukhanin V, Wolff J, Gleason K, Wachenheim D, Salmi L, Gonzales MJ, Parshley M, Epstein S, Mohile S, Farrell TW, Supiano MA, DesRoches CM and the Shared Access Project Team. Users’ perspectives on a demonstration to increase shared access to older adults’ patient portals. BMC Health Serv Res 25, 586 (2025). doi: 10.1186/s12913-025-12755-0

As More Patients Get Automated Test Results, Researchers Seek Ways to Calm Their Nerves

"How do we best support the patients who are having trouble contextualizing what a result means in their health?” asks Vanderbilt biomedical informaticist Bryan Steitz, PhD, the lead author of a recent paper on refresh and messaging behavior in JAMA Network Open. Read this article. (paywalled 🔒 )

Shared Access: A Vital Tool for Care Partners (encore webinar recording)

Shared access to patient portals is a vital tool for those assisting family or friends with managing their care. In this Institute for Patient- and Family-Centered Care (IPFCC) session, learn more about what shared access is, how it can be beneficial to patients and their care partners, and what was learned from a demonstration project with three health systems. Presenters include experts from OpenNotes, the Johns Hopkins Bloomberg School of Public Health, University of Utah Health, and a patient/care partner advocate. Watch now.

Swaay Health "Patient Experience Program of the Year Award" Goes to OpenNotes

This award recognizes initiatives that improved or sustained high levels of excellence in patient experience, patient access, and/or patient engagement. OpenNotes is honored to have been nominated by the community for this prestigious award. Thank you to Swaay Health for honoring the work of OpenNotes! See who else won awards.