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
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Tom Delbanco, MD

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.

Q: The doctors who did sign on – did they do so grudgingly, or enthusiastically?

A: There was a broad range. Some were enthusiastic. Some kind of said, "Well, it's going to come anyway, I might as well try it." And some were, frankly, almost conscripted. So there was a range of expectations. About 80 percent of the doctors who told us to go to hell felt it would mean more work for them. About 50 percent of the doctors who volunteered also felt it would mean more work.

We did a study before we started – we studied the expectations of doctors and patients – and then the study that got us all the attention was, after we had done it for a year – what happened.

We asked three basic questions: First, will patients read their notes, and will they report benefits from them? Number two, will it (overburden) the doctor? And number three, after a year, will the patient and doctor want to continue? They were very simple research questions.

The results were that the patients were extraordinarily enthusiastic: 80 percent of them read their notes. That said, one out of five chose not to read their notes. I always make that point: freedom of choice. We had a wonderful quote from a woman in Maine who said, "I want to have it, it's all mine, it's my business. But I may not read it."

So, 80 percent read them, but 99 percent said the practice should continue. The patients loved it. And more importantly they reported really important clinical benefits: 70 percent felt more in control of their care and better educated. They felt better prepared for visits. They remembered their visits better, which is a big issue – you go to your doctor and you remember about 40 percent of what happened, and what you remember may be wrong. It's a high-stress situation, even if you're well.

It's a big deal. And the biggest deal of all is that about 70 percent of patients said they were taking medicines better. Which, even if it's a five-fold exaggeration would be mind-blowing.

They also shared them with other people: 35 to 40 percent of patients shared their notes with other people. That's important. You share them with your aunt the doctor or your cousin the lawyer. You can put them on Facebook, if you want. The doctor-patient relationship is confidential. But whether it's private now is up to you. You can download now and share with whomever you want and say, "What do you think?" You're in control. It's much more your record than it ever was.

Q: And the doctors? What were their early thoughts?

A: Not one doctor quit. They didn't all love it. They wrote their notes somewhat differently – about a quarter of them did – but not one quit after a year. And we now have thousands and thousands of doctors doing it and we've not heard yet about one who's started, then stopped.

Partly, because I think patients just expect and want it. Eighty-five percent of patients said it would help determine their future choice of provider – whether or not OpenNotes was present. Once they tasted it, they really wanted it.

Two years after we published these results, we had this amazing spread – and to flagship places. It's kind of a who's-who of American medicine: Mayo and Cleveland Clinic and Kaiser Northwest and Dartmouth-Hitchcock and University of Colorado. etc. It's a lot of very fancy places.

The next trick is to spread it to what's called the early majority. The people in the real world who serve real America. Mayo Clinic is not the real world. So that's our next goal, to go from 5 million to 50 million. And our real goal is to have it become the standard of care in this country.

Q: In the meantime, what else is next?

A: (OpenNotes) has implications for patient safety. We're doing a big study to see what errors are picked up by patients; what mistakes are averted. And we have lots of anecdotes along those lines already.

It has big implications for cost and quality and value: The patient who says, 'I did what you said, Tom. I'm doing fine, I feel better, I'll cancel the next visit.' Cancel a few visits, keep people out of the doctor's office, and that becomes a serious money saver if you multiply it by a few million people. So it has big implications for value.

It has implication for medical education. Why shouldn't a young doctor have his notes critiqued by a patient?

But it's not black and white. For example, we're about to send off a paper that shows, if you remind patients to read the notes, they're much more apt to do it than if you don't. Doctors want to be able to hide some notes. Should they be able to hide part of their notes? Patients may want to have part of their notes hidden from their caregivers

Q: Have you found that any physicians are less than forthcoming?

A: That's a good question: Is the note dumbed down? We have no evidence of that. People were afraid it would happen, but we have no evidence that it's happened.

There are fewer abbreviations. (Doctors) are quietly, I think, aiming the note more toward the patient. The example we always give is SOB: SOB to me means shortness of breath. To you it may mean something else. There are abbreviations we use that you don't know. There are words we use that you don't know.

We use the word "dyspnea." It also means shortness of breath. Pretty soon, with new technologies, you'll be able to put a cursor on that word and it will say "shortness of breath".

Q: Talk about the technology angle of all this.

A: The big players are Epic, Cerner, Meditech, athenahealth and folks like that. We've been working with Epic. Epic next year plans to have OpenNotes as the default foundation. If a hospital buys Epic, it will be delivered with OpenNotes in it. That's a big deal for us. And the upgrades, too: every upgrade they have will make it very easy to go to OpenNotes, if you don't have it already.

Epic is going to instruct their customers how to work with OpenNotes. We're working with Cerner, we're working with other people too. Epic says it serves 170 million people. Cerner says it serves 60 million people. That's a lot of people.

The other targets for us are the CMIOs. They become the transformational officers for their institutions. We're working very closely with them because they're the ones who can flip the switch and make it work.

Our hospital has a homegrown EHR. Most people buy them off the shelf or adapt the portal to their own needs. Epic supplies Geisinger; Geisinger doesn't have MyChart, it has MyGeisinger, which is their adaptation of the portal that Epic provides them. Into that, they can build OpenNotes – which they're increasingly doing.

But I want to emphasize: This is not a software package. This is a movement. This is a movement of full transparency. It's a movement to engage patients and enhance communication between patients and those that take care of them.

We're going to target several groups of people. We're going to target CEOs, we're going to target payers. We've talked with ONC. We've talked with the American College of Physicians, who are advocates for this. We talked with provider groups of all sizes. We try to allay they fears: Try it, you may like it.

We'll also put pressure on from the consumer side. Consumer Reports has written about us a lot, and we work with them closely. We work with the AARP. We're meeting with the Alzheimer's Association next week.

Q: What are some other things you've noticed as OpenNotes has spread?


A: There will be pressure on and among the providers, I think. Another thing that happens is competition. In three parts of this country we've seen a fascinating phenomenon. In Portland, Ore. and Seattle, and in the middle of Pennsylvania, we've seen organizations adopting OpenNotes because the other guy has it.

In Portland, Ore., nine normally-competing organizations got together to work together on OpenNotes; an extraordinary thing. We call it the Portland Consortium.

In Seattle, basically all the big players are doing it, with one other thinking about doing it: University of Washington. Virginia Basin, Group Health, Kaiser Northwest. The only big outlier is Swedish Hospital, and I bet you they'll be doing it within the year. So the word gets around.

The registrations on our portal here are way up since we started OpenNotes. It brings patients to the portal. It keeps patients in the institution. It's a way of both attracting and retaining patients. That's one of the business cases for it.

It's the right thing to do, and there's also a business case as (providers) compete in a crowded market. That's one of the reasons we think we're spreading so quickly.