Dr. Cait DesRoches, Executive Director at OpenNotes, and Liz Salmi, the group’s Communications and Patient Initiatives Director, have spent years advocating for transparency in care. In a conversation with Swaay.Health, they unpacked what happens when patients read their own records—and how that same ethos is now shaping their approach to healthcare AI.
Key Takeaways
Opening access to clinical notes has had ripple effects few anticipated. According to Dr. DesRoches, patients are flagging real errors often before anyone else notices like wrong sidedness – “You know, where I need surgery on my left hand, but my note says right hand.”
Dr. DesRoches also points to wrong medications and wrong dosages as a common error that patients catch. In other cases, entirely incorrect notes from another patient have appeared in the chart.
Salmi, who reads every note from her oncology team, added: “I go back and reread the note from the last visit to remind myself – oh I did all those things, but I forgot to do those things. I better check into that.”
OpenNotes may have started as a transparency effort, but it has morphed into a quiet layer of safety checking, memory support, and accountability.
For teams stretched thin, sharing notes can feel like one more thing to manage. But DesRoches is quick to point out that the hard part, the documentation, is already done. “The clinicians are already writing the notes… So why not take advantage of it?” she said. All we have to do is have patients “log in and read their note. It doesn’t cost anything.”
In the early days, many systems feared open notes would generate more patient messages, but studies show the opposite: patients actually call less when they can go back and confirm what their provider said. As Salmi put it, “I read it that one time, and then I forget about it. But when I’m preparing for my next visit, I go back.” That easy access means one less phone call.
After helping the industry realize that opening clinical notes to patients does not result in a deluge of inquiries and can help improve engagement, the OpenNotes team is now turning their attention to the use of AI in healthcare. Their latest project focuses on how patients interpret complex, and sometimes frightening, test results – especially in cases when they arrive before a clinician can explain them.
“What if my patient finds out they have cancer at 4:30 on a Friday,” DesRoches asked, “and they’re left with this incomprehensible report and there’s no one [there]?” Rather than roll back access to results based on this chance situation, the OpenNotes team is working to develop patient-friendly summaries using large language models that are co-designed with patients.
The OpenNotes team doesn’t sell software, they are showing through research, evidence and hard work that openness helps patients be more engaged. They are also showing that listening to patient voices helps them be more effective in their work.
As DesRoches put it: “Just lift the window…and let patients see in.”
Learn more about OpenNotes at https://www.opennotes.org/
