Can AI Help Patients Decode Their Medical Notes? OpenNotes Team Says Yes—with a Persona Twist

At last month’s Symposium on Artificial Intelligence for Learning Health Systems (SAIL) conference in Río Grande, Puerto Rico, Cait DesRoches, DrPH, Dana Lewis, and Chethan Sarabu, MD, presented a poster on a proof-of-concept study exploring how patients might use large language models (LLMs) to better understand their open notes.

The study findings suggest that carefully crafted, persona-based prompts can significantly improve the accuracy and clarity of AI-generated responses to patient questions, pointing toward promising future applications in patient education and health literacy. Read the paper. (open access)

🎸 Open Results Reunion Tour: Getting the Band Back Together at CIC

At the AMIA Clinical Informatics Conference last week, members of the original “Open Results” team—Rob Turer, MD, Liz Salmi, Scott MacDonald, MD, and Bryan Steitz, PhD—reunited for what felt like an Open Results encore performance. Their 2023 JAMA Network Open study, cited nearly 100 times in the last 2 years, revealed that patients overwhelmingly prefer immediate access to test results—even when abnormal—and often experience less worry than feared. Now, along with colleagues at the University of Colorado, the team is tuning up for their next big collaboration: exploring how AI might help patients better understand radiology reports and other complex health data. Read the study that started it all. (open access)

Join a Coffee Chat on Engaging Care Partners: Shared Access to Adult Patient Portals

On Friday, June 13, 12-1pm EST/9-10am PST, Cait DesRoches, DrPH, Deborah Wachenheim, MPP, and Rosie Bartel, MA, will be discussing their ongoing advocacy and research on shared access to patient portals for care partners. A recent study in JAMA Open Network found that fewer than half of patients knew they could share access to their patient portal. The study also found that an awareness campaign resulted in increased shared access log-ins and increased viewing of notes and labs by care partners. Sign up to join.

Alzheimer's & Brain Awareness Month

In honor of Alzheimer's and Brain Awareness Month 2025, we're sharing publications from two OpenNoters who've partnered on research on Alzheimer's disease and related dementias (ADRD):

Catalyzing Dementia Care Through the Learning Health System and Consumer Health Information Technology

This publication discusses how emerging payment models, quality improvement initiatives, and population health strategies present opportunities to embed best practice principles of Alzheimer's disease and related dementias care within learning health system principles. Open access.

Wolff JL, DesRoches CM, Amjad H, Burgdorf JG, Caffrey M, Fabius CD, Gleason KT, Green AR, Lin CT, Nothelle SK, Peereboom D, Powell DS, Riffin CA, Lum HD, Catalyzing dementia care through the learning health system and consumer health information technology. Alzheimer's Dement. 2023; doi: 10.1002/alz.12918

Gaps In The Coordination of Care for People Living with Dementia

About one-third of people living with dementia receive fragmented care from multiple providers. This study aimed to find out how often gaps in communication are perceived and how often they are linked to self-reported adverse events. Read more.

Kern LM, Riffin C, Phongtankuel V, Aucapina, JE, Banerjee S, Ringel JB, Tobin JN, Fisseha S, Meiri H, Bell SK, Casale PN. Gaps in the coordination of care for people living with dementia. J Am Geriatr Soc. 2024; doi: 10.1111/jgs.19105