RWJF Year in Research: An Interview with Thomas L. Delbanco

Voted No. 2 Most Influential Research Article of 2012, Thomas Delbanco and Janice Walker co-direct OpenNotes, a project that tests the radical yet simple idea that physicians' notes should be for the patient, not just about the patient.

    • February 28, 2013

What people ultimately remembered after reading our long paper was that patients and doctors wanted to keep going with OpenNotes after a year. That was a bottom-line message.”

 

Tom Delbanco and Jan Walker (first authors), Sigall K. Bell, Jonathan D. Darer, Joann G. Elmore, Nadine Farag, Henry J. Feldman, Roanne Mejilla, Long Ngo, James D. Ralston, Stephen E. Ross, Neha Trivedi, Elisabeth Vodicka, and Suzanne G. Leveille, are the authors of "Inviting Patients to Read Their Doctors' Notes."

This article was published in the October 2012 issue of the Annals of Internal Medicine.

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Janice Walker

 

OpenNotes: Demonstrating and evaluating transparency in primary care, Phase 2

This article was funded through OpenNotes, a project of the Robert Wood Johnson Foundation. OpenNotes is co-directed by Tom Delbanco and Jan Walker.

What was the inspiration for this studythe critical knowledge gap you were trying to fill or the challenge you were trying to address?

My interest was triggered by one patient about 35 years ago. He was a printer, and as I was talking with him about what I thought might be a problem with alcohol because of the history he was giving me, I realized he could read everything I was writing upside down. I said, “You know, I'm trying to decide whether I should write ‘alcohol abuse’ on your problem list, because there’s not much point in my writing it down if you don’t think you have it. But I’m worried about it and we should agree on whether or not to write it down.” And he was silent for about 30 seconds, and then he said, write it down.

I never forgot that experience. Similarly, the stimuli that Jan has noted are very personal. When she was a young nurse heading up the coronary unit at old Boston City Hospital, one of her jobs was to keep patients and their families from looking at the chart. And many years later, when her mother was critically ill in another hospital, she was kept away from her mother’s chart, even though she was a nurse. 

In the early ‘90s, Jan and I had begun working together at the Picker Institute when we were among the first to call on patients as expert witnesses to the care we provide. There we developed surveys focusing not on satisfaction, but rather on what happened to you in the hospital or in the office. Ever since then, we both thought that the medical record is the hub of the wheel—and why shouldn’t the patient (and often the family) both be privy to its contents and indeed at its center. Technology today makes that a lot easier, and after all, it’s his or her record! 

In a nutshell, what were the key findings and why are they significant?

Many people don’t even realize that after we see them in the office, we write a note about that encounter. That note serves many purposes. It’s to remind us next time about what happened. It’s to communicate with our colleagues if we need to. It is for billing purposes. It’s for quality assurance. Historically, lots of people have been privy to that note—except for the patient and the family member. So with OpenNotes, we did this terribly simple experiment in which we invited people to read our notes after we wrote them, and we did it electronically. 

We asked three basic questions: Would we find that patients read the notes and got something clinically meaningful out of them? Was this the straw that broke the doctor’s back, and did it scare the hell out of the patients? And three, most importantly, at the end of a year’s experience with this, how would the doctors and patients vote about going on? Would they want to turn the machine off, or would they want to keep it going? 

What we learned is that patients were extraordinarily enthusiastic. More than four out of five read the notes, and they reported really important clinical benefits. Eight in 10 said they felt more in control of their care, better prepared for visits, and that they understood what was happening with their health care and illness better. And most importantly of all, and really surprisingly, more than 70 percent said they were taking medicines that they were supposed to take more effectively and more accurately. That is an extraordinary finding if it turns out to be true. And even if it were a fivefold exaggeration, it would be a big leap forward, because it is terribly difficult to convince people that they should really swallow the medicines they’ve agreed to take. After the first year, 99 percent of the patients (including those who chose not to read the notes) said keep it up, and not one doctor asked that the machine be turned off. In fact, for the doctors, it was much ado about nothing at first, but as time passes, many of the doctors dispensing this new medicine have turned into full-blown enthusiasts.

Who did you most want this research to reach, and what influence did you hope to have?

For us, the patient comes first. Given what we learned, we are hoping now to reach a very broad range of people and excite them with the notion of simply asking their doctor or nurse to give them a copy of the record. It doesn’t have to be by computer, it can be any way, just to become part of that party, to peer into the doctor’s black box. But we are also, of course, enormously interested in reaching health professionals of all stripes, clinicians, policy-makers, leaders, payers, researchers. 

What are a couple examples of uptake and impact you are particularly proud of thus far?

The Annals of Internal Medicine just told us that when it comes to media interest, we were in the top 10 of their articles for the year. We’re totally thrilled that the Department of Veterans Affairs (VA) has picked up OpenNotes as part of VA Blue Button (the system that allows veterans to download an electronic file that contains their personal health information). That means more than a million portal users automatically are going to be getting OpenNotes.

In the next few months, Beth Israel Deaconess Medical Center is going to invite their patients to read the notes written by virtually all their staff physicians, and notes written by house staff, nurses, occupational and physical therapists, social workers, clinical pharmacists, and physicians’ assistants. That’s happening quickly here, and the same with our partners: Geisinger has signed up more than 600 doctors by now, and Harborview Medical Center is rapidly going in this direction. Mayo Clinic is now offering their patients OpenNotes. And other major places are giving this active consideration. So we see the virus spreading among the health professionals much more quickly than we expected. 

Are there other unexpected audiences who have taken interest, and/or new audiences you did not initially think about who you feel would benefit from this research?

Starting out, I don’t think we thought as hard as we should have about what this would mean for nursing. Recently, we’ve been getting more and more inquiries from the nursing profession about this. My own view is that patients are too often afraid of doctors—too often are loathe to bother us, to take us on or what have you. Jan has had an important insight—and that is that patients are not afraid of nurses, and our guess is that the role of nursing, as it evolves further, will be incredibly important.

We’re also realizing that OpenNotes in ambulatory practice is very different from what it will look like in the inpatient practice of medicine.  What it will mean in intensive care or on the hospital wards is very different from the office practice of primary care or even subspecialty medicine. Similarly, how it would play out in a nursing home or a rehabilitation center or, most importantly, I think, in the future, in the home is a totally fascinating set of questions. We’re only now beginning to embark on that voyage of discovery.

Are there any lessons from this project that will inform your future research, or that you’d share with other researchers who want to maximize the impact and reach of their work?

What I would say first is, try to have your research tell a story. That means mixing data with anecdote. Also, try to keep research questions simple, short and to the point. What people ultimately remembered after reading our long paper was that patients and doctors wanted to keep going with OpenNotes after a year. That was a bottom-line message.

Finally, don't be afraid to be a little provocative and make a statement. Don't end every paper by saying, "We need to learn more," and a skeptic can always find problems with a research project. Be brave. We ended our paper by saying OpenNotes was simply the right thing to do.

 

2012-winner
2012-winner

No. 2 Year in Research Winner for 2012

Inviting Patients to Read Their Doctors' Notes

This project could help drive a culture of more transparency between patients and providers, empowering two-way communication and levels the proverbial 'playing field.

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OpenNotes: Demonstrating and evaluating transparency in primary care (Phase 2)

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