OpenNotes: 'This is not a software package, this is a movement'

'A lot of doctors told us to go to hell'
By Mike Miliard
10:35 AM

Tom Delbanco, MD, professor of general medicine and primary care at Harvard Medical School and former chief of general medicine at Beth Israel Deaconess Medical Center, is also co-director of the OpenNotes project, which gives patients access to the clinical notes written by their doctors and nurses.

OpenNotes initially launched in 2010 as a pilot program in three select locations: BIDMC, Geisinger Health System and Harborview Medical Center in Seattle. It soon became apparent that what may have seemed, at first, to be a revolutionary concept had struck a nerve.

Over the past five years, the initiative -- which Delbanco first developed alongside BIDMC researcher Jan Walker, RN -- has grown almost exponentially, finding footholds at some of the largest and most prestigious providers in the country, including the VA, Kaiser Permanente Northwest, Oregon Health & Science University and University of Colorado Health.

On Feb. 10, at the Healthcare IT News/HIMSS Media Patient Engagement Summit, at the Hyatt Regency in Orlando, Delbanco's BIDMC colleague, National OpenNotes Program Director Melissa Anselmo, will talk about why OpenNotes is such a hit with patients – and, despite some initial resistance, most of the physicians who take part in it as well.

In the meantime. Delbanco describes how the project has evolved thus far, and how it plans to expand to a truly nationwide movement.  

Q: OpenNotes has experienced some pretty impressive growth since that first pilot in 2010.

A: We've gone from 20,000 people two years ago to, we think, between 4.5 million and 5 million now, who have access to their notes via secure electronic portals.

Q: Clearly this is an idea that had legs. So how did it all get started?

A: I've always thought the medical record is the hub of the wheel, the way to bring patients much closer to those who care for them. I did an experiment 30 years ago where I actually had patients walking around this hospital with records they kept – and writing their own records along with the doctors writing theirs – and saying, 'Let's compare notes.' We published a paper about that, the doctors thought the patients were crazy. It was a little early.

Then we got a grant (in 2010) from the Robert Wood Johnson Foundation to try this out in a big way using electronic portals. We asked doctors to volunteer in three settings. One is Beth Israel Deaconess, one of the big Harvard teaching hospitals. Another is the Geisinger Health System, which is this enormous integrated health system, serving rural Pennsylvania. And the third is Harborview, a safety net hospital in Seattle. We wanted three very different sites.

A lot of doctors told us to go to hell. But we got more than 100 to volunteer – primary care doctors – which meant that automatically their patients who were registered on portals would be part of the study. There were about 20,000 of them.

Q: Did you notice any differences between those three very different locales?

A: We found extraordinarily few differences, which was very interesting; much fewer than we expected. Part of what helped our study was that we didn't just do it in one place, and that the findings, from both doctors and patients, were so similar. People felt it really had some generalizability to it.

The intervention was very simple: After the doctor signed his or her note, the patient automatically got an email saying, "Tom just signed his note; Mike, you're welcome to read, it." And then, two weeks before your appointment with your primary care doctor, you got a reminder email saying, "You might want to review your notes."

That's all there was to it. A very simple intervention. All the vendors have them. But what's been hidden, up to now, is what the doctor writes, and what he or she thinks about you. You can look up your lab work, you can look up your X-ray results, you can send secure emails, you can ask for appointments and refills. But you have not, in the past, been able to look up what the doctor wrote about you. That's what the disruptive innovation is.

Q: You can understand why many doctors would be resistant to this.

A: Oh yeah. They had many fears that they said out loud. The biggest was that it would disrupt their workflow – and primary care doctors feel overwhelmed already. The second was that it would scare the hell out of their patients. Those were the two biggest fears.

And I think there were other fears… I guess we can get into it, because we've been writing about it. (Pauses.) I think that notes are not always truthful. I asked an internist recently at a New England Journal of Medicine meeting, "How many 40-minute visits can you do in an hour?"

Because of reimbursement in a fee-for-service world, doctors are really paid for their time and what they do. We've had quite a few anecdotes now of a note that says, "I spent 40 minutes with a patient and examined him from stem to stern. And the patient reads it and says, "Wait a minute, you never touched me." And I think although the doctors won't say it out loud, that's one of the reasons they're hesitant to do it.

Now, when you go to population-based care, when you go to ACOs, when you go to systems that reward quality rather than quantity that doesn't become an issue anymore. You don't have to write that kind of note.

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