Seven years after it first launched, the OpenNotes program is now available to 19 million people. More than 80 organizations have made patients’ clinical notes available to them, in 47 states — all except Maine, Rhode Island, and Alabama.

At the first ever Society for Participatory Medicine conference, a co-located pre-conference event connected to the Connected Health Conference in Boston, OpenNotes co-director Dr. Tom Delbanco, professor of medicine at Harvard Medical School, shared some of the insights and challenges OpenNotes has encountered over the last seven years. Liz Salmi, senior multimedia communications manager at OpenNotes, also shared her patient story at the conference.

Salmi, a brain cancer survivor, discovered her patient notes on her own, after requesting her records from Kaiser Permanente and receiving a 4,836-page pdf.

“I scrolled to the bottom of this huge PDF, and I saw this: my notes,” she said. “I had never seen this information. Now our clinical notes are the most important part of our medical record. Doctors and other members of the healthcare team can see this information and it details patient status and plan for care. Like most people, I had never seen this very same information. I could Google my condition, but I never knew what my own doctors were writing about me.”

Delbanco said that data coming in shows that 70 percent of patients feel more in control of their care thanks to OpenNotes and 97 percent wanted to continue the program. But beyond that, his talk focused on the challenges of OpenNotes, both the expected challenges that have not materialized and the unexpected ones that have.

“Doctors were worried they’d have to change the way they wrote, that they’d need more time,. They were worried about constant requests to change the note. They were worried that their workflow would be disturbed. They thought they might scare their patients, make them more anxious or confused. They thought they might offend the patients, or didn’t want to give them one more thing to do,” Delbanco said. “Those worries seemed to be unfounded. The anticipation is awful, and the reality is fine. I make the analogy to New England oysters — you see your first two and you turn green, you swallow one and you’re hooked.”

One challenge that has emerged is that, since clinical notes are usually made available through the patient portal in the EHR, it’s not always easy for patients to access them.

“In some places it’s very clear,” Delbanco said. “In other places you have to be a genius to find the notes and we’re working on that very hard. We’ve got Epic and Cerner competing against each other. When we talk to Epic we say ‘You should see what Cerner’s doing this week.’ When we talk to Cerner we say ‘Boy, is Epic making progress.' And that’s working out well.”

Some of the other challenges Delbanco outlined in his talk included concerns around mental health, adolescents, and domestic abuse. As to mental health, Delbanco thinks the problem is overblown, and experiments in that area are starting to bear that out.

“Fifty percent of what we do in primary care has to do with mental health anyway and they’re doing it fine,” he said. “Why shouldn’t psychotherapists and psychiatrists also do OpenNotes? Well they are. And they’re liking it. And they’re using OpenNotes as part of the treatment. But they’re still stigma attached and there’s still resistance to that.”

As for the other two, the best solution seems to be to segment off parts of the record to ensure everyone’s safety and privacy.

“Separate records are increasingly being developed for adolescents so they can have [privacy from their parents]. According to a study we’re just completing, half of the adolescents who are offered open notes read their notes,” he said. “What about the abuser looking over the shoulder and reading a note that says the doctor is worried about abuse? Not an easy issue. Another carve-out. In this state, you can keep separate notes about that.”

Delbanco also described concerns about doctors who are poor note-takers or for whom English is a second language. But among the biggest concerns is that OpenNotes can expose dubious documentation practices, especially in the fee-for-service world.

“Then there’s upcoding, that’s the elegant way of putting it,” Delbanco said. “I call it lying. …The patient reads the notes [and they say] ‘The great man paraded in, he addressed five issues with me, examined me from tip to stern.' And the patient sits there and says ‘I saw him for five minutes and he never touched me.’ That’s the biggest reason doctors are resisting OpenNotes. They’ll never say it out loud, but I’m quite sure.”

Next up for OpenNotes is patient coproduction of notes, something that will be piloted soon at a handful of institutions including Beth Israel Deaconess. That and, of course, continuing to scale the OpenNotes movement.

“We’re talking culture change and culture change is not easy for anyone,” Delbanco said. “It’s not easy for EHR vendors, it’s not easy for clinicians, and it’s not easy for patients.”