Sharing clinical notes with patients

AMA STEPS Forward® podcast

Sharing Clinical Notes With Patients

Sep 30, 2023

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In this episode of the AMA STEPS Forward® podcast, Tom Delbanco, MD, and Catherine DesRoches, DrPH, co-founder and executive director respectively of OpenNotes, discuss common concerns and best practices when sharing clinical notes with patients. Read the full toolkit on this topic to learn more.

Speaker

• Tom Delbanco, MD, co-founder, OpenNotes; professor of medicine, Harvard Medical School
• Catherine DesRoches, DrPH, executive director, OpenNotes; associate professor of medicine, Harvard Medical School

Host

• Jill Jin, MD, MPH, senior physician advisor, American Medical Association

Listen to the episode on the go on Apple Podcasts, Spotify, or anywhere podcasts are available.

Introduction: Hello and welcome to the AMA STEPS Forward® podcast series. We'll hear from health care leaders nationwide about real-world solutions to the challenges that practices are confronting today. Solutions that help put the joy back into medicine. AMA STEPS Forward® program is open access and free to all at stepsforward.org.

Dr. Jin: Hello. My name is Dr. Jill Jin and today on the podcast we are discussing shared clinical notes with patients. In other words, open access clinical notes. And I'm thrilled to welcome our expert guest, Dr. Tom Delbanco, the Keane professor of medicine at Harvard Medical School and Beth Israel Deaconess Hospital and co-founder of OpenNotes, the organization that originally promoted and continues to promote open access clinical notes. As well as Cait DesRoches, an associate professor of medicine at Harvard Medical School and the current executive director of OpenNotes.

Tom and Cait, thank you both so much for being here today. We're so honored to have the two of you as guests. I do want to give both of you the chance to tell our listeners a little bit more about yourselves and your backgrounds. So Tom, would you like to go first?

Dr. Delbanco: Well, I'm a general internist. I practiced primary care for 40 years, and I actually started up and led the division of general medicine and primary care at Beth Israel Hospital, which is now Beth Israel Deaconess Medical Center. I’ve long reinvented myself but basically been interested in breaking down walls between we clinicians and the patients that we serve. And as such ended up starting up the OpenNotes movement, which we'll talk about.

Dr. Jin: Great, wonderful. Cait?

DesRoches: I'm Cait DesRoches. I'm an associate professor of medicine at Harvard Medical School and I am the director of OpenNotes. I am not a clinician. I have a health services research background. I come out of the public health world, and I have long been interested in the intersection of information technology and how and why it's used and how health information technology can be used to improve patient care from the patient perspective.

Dr. Jin: So let's dive right in. Tell us more about OpenNotes—both the organization as well as the concept of open access, shared clinical notes between clinicians and patients.

Dr. Delbanco: Why don't I take a historical view of this? I woke up one day in the '70s and read an article in the New England Journal of Medicine by Shenkin and Warner, a pediatrician and a social scientist, saying, “Hey, why don't we all share notes and everything in the medical record with our patients? Why don't we give that a try?” And I was very struck by that. And in my practice I found myself more and more sharing what I wrote down with my patients. Sometimes printing it out, sometimes sending them copies, sometimes handing them copies in the office. As we became computerized with our record systems, doing it more and more. And as we develop patient portals in the late '90s and beginning to say, why should they just look at laboratory results or send me emails or look at their medication sheets? Why shouldn't they read what I'm writing about them because it's there behind an invisible wall?

And armed with this insight or interest, I teamed up with Jan Walker, a nurse by training, but also now an associate professor of medicine at Harvard. We've worked together for 30 years, and we went down to the Robert Wood Johnson Foundation and said, you guys are supposed to take chances on crazy ideas. We would like you to give us a grant to try and see what happens if doctors invited patients to read what they wrote about them. And that was really the genesis in, it's now about 12 years ago, when we did a study with 10,000 patients, 100 primary care doctors in three different places at the Beth Israel and Urban Teaching Hospital and associated practices at Geisinger, a decidedly rural practice in the middle of nowhere in Pennsylvania. And at Harborview Hospital, which is a safety net hospital in Seattle.

And 100 doctors volunteered to do this. And they asked their patients to read the notes. And we looked at their expectations, we looked at what happened. We were very encouraged by what happened. Patients loved it. Doctors thought it was much less burdensome than they expected and many of them actually liked it. And each of the three institutions, most importantly, decided not only to go on with the experiment but to widen it and involve all their practices.

And that led us on a long march, which has ended this year―and Cait can explain more about that―with a national law that says, thou shall do this. So from our point of view we've gone from 10,000 patients to 340 million and it's been quite an adventure.

DesRoches: I want to highlight the relative speed with which this moved from what was really a fringe idea. And I will just add that in 2010 when Tom and Jan were trying to recruit patients for this study, I was sitting in a research group in another hospital across town that won't be named. We were watching what was happening with this pilot. We knew what was going on. There's a lot of crosstalk amongst—it's a small community. And the general feeling was they are nuts. They are never ever going to get primary care docs or any docs to share their notes with patients. That's never going to happen. And so to go from that really a fringe idea to this past April when it became a federal regulation, it's remarkable. It's really quite—when you think about the speed, the average speed with which an innovation makes it from the first journal publication to regular practice, this was quite speedy even though it took 12 years.

Dr. Jin: So Tom, you obviously had this insight and this foresight to know that it was going to be successful. And I think that now most clinicians, since we don't have a choice, most clinicians believe it as well and are open to this process. But why is it important to share clinical notes with patients? Why is this level of transparency helpful?

Dr. Delbanco: So I think there are many answers. If you look through the patient's eyes first, which we generally try and do, it goes from the very concrete to the broader picture. The concrete thing is that if you go to see the doctor, there's quite a few studies out there that say, I will remember about 50% of what happened in that encounter. And in fact, I'll remember about half of that wrong. So if nothing else, just being able to check once you get home what actually happened, what is some of the stuff that went on, is a very important part of it. And patients tell us that.

Medications, I think, are an incredibly important part of it. I actually think the most important paper we've published—we've published about 100 papers now about this―was a very short paper that Cait led in the Annals of Internal Medicine that studied adherence to medications and what patients said about that with respect to OpenNotes.

And what was very striking is about two-thirds of the patients said they really understood the reasons for the medicines they've been prescribed better now, were more comfortable, were more knowledgeable. And a full 15% said that they were taking medicines differently and were adhering better. And as an old chest doctor―I began as a tuberculosis doctor―I know that one of the biggest challenges we as doctors face is convincing patients that they probably should take the medicines we prescribe. And if it's a 15% increase in adherence and you say that's a fivefold exaggeration from patients and it's only a 3% increase, that's still notable increase because we've all been struggling forever to get patients to adhere to the medical regimen, to their treatment plans. So, I think that's a very important component of it.

We also have learned that it builds trust, both from the clinician side to the patients and from the patient side to the clinicians. And we know, all of us, how important trust is in a very difficult time and medicine’s always a difficult time. It has never been more difficult than now.

Shared decision-making. How can you share decisions if you aren't both on the same page, so to speak? We're doing an experiment now in which patients are actually writing the interim history and expressing their goals for a visit before they even show up. We call that OurNotes. So that we agree on the action plans, we agree on what happened, what's found and where we go. So patients tell us they love that aspect of it and they tell it to us in a loud voice.

And on the other side, doctors are very queasy when they start this. It's scary. It's not the way I was brought up. I was told that the record was mine and I was going to basically tell patients what to do. Now that's changed a lot over the years. The playing field is viewed as being more level, but still, the notion of a patient reading what I write—I write that from my own memory. I write that to share with my colleagues. I write that for medical legal reasons. I write that for quality of care reasons. And now you're asking me to write it also for the patient and their families. That's a tall reach for a piece of paper or something in the computer. And that's hard and scary.

And what we've learned, to our pleasure, and we were very nervous about it, is that it's scary in concept, but in actuality, it works out very well. And as you implied, the majority of doctors we've studied now, large numbers in different studies that have been replicated, the majority of doctors, even mental health professionals, of nurses, not just doctors, are quite comfortable and increasingly comfortable with the notion as time goes on. So there are many good reasons we think to do it and we remain very excited by it, but we know that are a lot of challenges ahead of us still.

DesRoches: The additional piece I would highlight is safety. Actually, two additional pieces—one is safety. So a clinician has eyes on many, many notes, and a patient has two eyes on one note. And who could be more invested than patients in ensuring that their information is correct? So we, through our studies, have found that patients can and do identify really clinically significant errors in their notes that can affect the safety of their care—their diagnostic safety. And that finding has also shown up among clinicians saying that, yes, there was a time when a patient found a mistake that was clinically relevant. And there are things like medication dosages based on someone else's lab results. Things that are obviously typos though that are clinically meaningful.

One that really stands out in my mind is a patient saying that my note said that I was not BRCA when I am. Those kinds of things are very—they're clinically significant.

And then the second—I would just add there's benefits for clinicians, there's benefits for patients, there's also benefits for those patients' family members and informal caregivers. They are able to do their jobs better when they have the information that they need. And the notes are, particularly in our surveys, are particularly meaningful for them.

Dr. Jin: I do think that my personal experience transitioning to OpenNotes was just that what you both described because our institution went to OpenNotes in April right when the legislation came out and I was very skeptical and thought that I would have to change how I documented entirely, that it would take a lot more time. It ended up pretty much being a non-event. It seems like we don't get that much extra messages or phone calls or things about the notes.

But I still do worry about the medical jargon and just how patients handle that because it is a lot of it. We can't take all of it out. We have auto-correct and our system is Epic. There's auto-correct to take some of that out, but it's impossible to make it all patient-level language or non-medical language. So how do you get around that?

DesRoches: So, in our research what we've found is several things that I think can be helpful for clinicians to remember. And one is that patients don't expect the note to be anything other than what it is. They don't expect or want clinicians to sort of dumb down the language. They understand that the note is for other purposes. So that's one thing to think about.

The second is that they're incredibly resourceful. Most of them understand most of what's in the note and what that's probably picking up is that they're getting the gist of it. They perhaps don't need to understand every technical term, but they understand enough of the note that it's helpful for them to read it. And they tell us that they mostly understand all of it. And when they don't understand, they go to Google, possibly they have a family member or a friend who's a clinician, or a nurse, or a respiratory therapist or someone else who can help them interpret.

I worry sometimes that we're underestimating the resourcefulness of patients who are―patients who are engaged enough to read their own notes are also going to be engaged enough to figure things out that they don't understand.

We know that health-related issues are the most searched terms on Google. So why not have patients be Googling accurate terms from their own record rather than just randomly looking up things using a search engine?

Dr. Jin: Good point.

Dr. Delbanco: The other thing, they know how busy we are, and they understand it and they don't want to, generally speaking, bother us for trivial matters or things that they think may be trivial. The most amazing phenomenon when we started this experiment, Jan and I spent hours preparing the hospital for the avalanche. We talked to the assistants, to the phone operators, to the nursing staff said, “Get ready, here it goes, we're going to flip the switch.” And basically, the most common question I was asked once we started by the doctors was, “Are you sure the computer's working? We don't hear a word from our patients.”

We found that many of our patients were, when we studied it, were avidly reading these notes. They know that we're overwhelmed. They know that we're too busy. They know that we hardly have enough time for them when they need us. So they pick and choose about when they're going to get to us. Email traffic, when we studied it before and after the event, did not change—the email volume.

Now we all remember that one patient who comes into the office with a list of 37 items and is very unhappy when we don't address them. We forget the 99 patients who don't come in with that list. But on average, in the aggregate, it is as you put it very nicely, a non-event. And that has been replicated many, many places.

Dr. Jin: Are there any specific tips that you have for clinicians in terms of how to frame their notes or what to put in their notes or how to prepare their patients? Should we be telling our patients, "Hey, go ahead and read the note after your visit"? Should we not tell them that? What do you recommend?

DesRoches: Well, I worry that with the federal information, with the information blocking rule, that organizations will comply with the letter but not the spirit of the rule. To me, the spirit of the rule and the spirit of OpenNotes is you want patients to read those notes. Review the note before you come back for your next visit. You want them to maybe look at it when they go home to make sure they understand what they're supposed to do next, how they're supposed to take a medication, what follow-up care are they supposed to be getting.

So if we don't get to that point where patients are actively using the information in their notes to take care of themselves and make decisions about their care, then we've just created a lot of angst around transparency for clinicians, for IT people, for health care leaders. And we don't get to the real benefit of transparency, which is that someone's actually using it. Again, transparency is not that meaningful if no one's actually looking at what you're doing.

So, I would encourage clinicians to tell patients “I'm writing a note about this visit, I'd like you to read it when you get home,” or “I'd like you to read it before you come back,” or “You may want to share this with your spouse or with your daughter” or whoever it is so that patients know the resources available and they know why they should look at it.

Dr. Delbanco: Most doctors report to us that they didn't change their note-writing habits at all after OpenNotes began. And we had some doctors who'd been doing it for years. And those who did change it made it more patient-friendly. I found myself in the earliest days saying, for example, sore throat. I might have written before sore throat and puss on the tonsils, neck a little sore, adenopathy, exudate is quite striking, erythema is there, penicillin. What I found myself modifying was, “Therefore this is likely a bacterial infection and I'm going to prescribe an antibiotic,” that's all the difference. But it became more of a teaching note to my patients. Doctor means teacher after all, and I found myself changing in quiet ways that way.

There are some cautions though. We just published a paper which has gotten a lot of attention about how often patients may feel judged or offended. We use rhetoric that we don't think about. Now some of its just initials. Everyone laughs when I say SOB. SOB to me and you means shortness of breath, to a patient that means something different. Or the patient denies or the patient is AB1 P2. What does that mean? That's our vernacular. That's what we learn. And the patient reads abortion and says, "Oh my god, what are we talking about here? What's in my record?" It's very tricky. The language is tricky. We had one forensic psychiatrist who suggested to us, write your note as if the patient's looking over your left shoulder and a lawyer is actually looking over your right shoulder and that way you'll get it right. It's a little stiff; we know of actually no increase in litigation or malpractice suits or anything by virtue of transparency, by the way, a question that often comes up from doctors.

But I think even at an unconscious level people become more conscious of what they're doing. We just got a big grant or a handsome grant from individuals at the Macy Foundation teaching our medical students at Harvard right from the start over a two-year period about how to write a note that really sings to a patient, to themselves, to others that respects diversity among the patients, respects anxieties, respects difficult issues such as abuse, such as how does the adolescent handle it? How do you use the word obesity? What does that mean to people?

There are tricky things and there are things we're still learning about. The whole issue of mental illness. Do you say this patient is psychotic? Is borderline? What do you mean by that? How do you explain it? And we view the mental health note actually more and more as part of the therapy and using it that way. But it's an evolving art and science. I don't think anyone should think it's simple. It is a real fundamental change in the fabric of practice. And patients, families and clinicians have to get used to it, and it will take time.

Dr. Jin: Yeah. I think that certainly there are specialties, as you mentioned, where it is especially challenging―mental health, adolescent medicine, pediatrics, maybe OB-GYN. But, I think that for primary care, like you said, it's more a matter of just changing a few key things and that eventually will become second nature, hopefully. It's a matter of how we were trained to write. Cait, back to your point. Do you think it's going to take a long time?

DesRoches: I do think it will take a while, but we've been tracking implementations for years now. So, before the information-blocking rule went into effect, we knew of at least 250 organizations that had already implemented OpenNotes. And we saw a very typical progression over time, which was, we're going to try it, we're going to keep it pretty quiet. We are going to soothe the clinicians by telling them we're not going to do a big announcement. We're just going to turn it on.

And then over time, as the tsunami of problems that clinicians envision doesn't come to pass and you start to see, okay, a little bit, alright, we're going to do a little bit here and a little bit there, we're going to tell some patients, we're going to try it in this clinic. And you start to see the rate of note reading start to climb.

But it does take time. And it's a learning process for patients, too. Even in places where they did a big splash at the beginning and said, “Hey, this is available and here's how you find it, and here's why you want to read your notes.” Those places still have had very low rates of patients accessing the notes to begin with. And it grows over time. So, it's a process for everyone.

There are additional changes that are going to come along with the information-blocking rule that are going to make it even easier for patients to access their information. Patients will be able to access their record through any third-party app of their choosing. Those kinds of changes, particularly with younger patients, we're going to start to see change building as those innovations roll out. Younger people, they expect to be able to see their data. And it's a global—global is probably too big of a word, but it's at least a sort of U.S. and Europe and Eastern Europe conversation about who owns my data and who can do what with it. And that's not just related to health, but it's related to all kinds of information. So that change that's happening in the broader world, I think is also going to affect how patients see their own health information.

Dr. Delbanco: The arc that Cait is pointing to so clearly is fascinating at two levels. One is, if I look back in history, I wrote my notes by pen and pencil, right? Then came along computerized notes, and my colleagues and I thought the world was going to end. We got used to it. Then along came patient portals, which were revealing laboratory studies, et cetera, to patients and my colleagues and I thought the world would end. We got used to it. Then along comes OpenNotes and some of my colleagues thought the world would end, and we're getting slowly used to it.

And if you look in the really big picture of the medical record, I grew up thinking that the record belonged to me. And in fact, I remember my mother-in-law, who was sick in the hospital, someone put her chart on her belly while she was being wheeled in a gurney from one room to another, and she picked it up to look at it and she was literally spanked by a nurse saying, you have no business looking at that. We've morphed from that kind of relationship to, I think it's fair to say right now, that the records are jointly held by patients and clinicians.

But, importantly, what Cait is pointing to is that in the future, our guess is that records will be held by patients, and you and I will be contributing to those records. Which fascinatingly enough is the way it has long worked in the developing world. Where in many countries people would walk around with a notebook, visit a doctor, the doctor would inscribe his or her impressions, the patient would say thank you very much, take back the notebook and walk to the next provider next time where the compilation of his or her record would rise. And in a way, that's where we're going, we think, in this country, particularly because of electronic modalities.

The whole interoperability stuff that we all talk about all the time, you get your care here, there and elsewhere―that will all be centered in one app. And we're close to that already in many respects. You know that.

Dr. Jin: So thank you both once again for your time, for these expert tips and for the bigger picture. I think I really enjoyed learning more about the arc, like you were saying, how far we've come since we started record keeping. And it's just fascinating to think about and exciting to see where this will all go. But I'm optimistic about it.

Dr. Delbanco: Thank you.

DesRoches: Thank you.

Outro: Thank you for listening to this episode from the AMA STEPS Forward® podcast series. AMA STEPS Forward® program is open access and free to all at stepsforward.org. STEPS Forward® can help put the joy back into medicine by offering real-world solutions to the challenges that your practice is confronting today. We look forward to you joining us next time on the AMA STEPS Forward® podcast series, stepsforward.org.

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Disclaimer: The viewpoints expressed in this podcast are those of the participants and/or do not necessarily reflect the views and policies of the AMA.