Empowering Patients and Doctors through OpenNotes: HealthChangers Podcast

July 10, 2017

Whenever you get a checkup, or go to the ER, there's a doctor or a nurse on hand, typing notes about your health into a computer. They are often recording things like your weight, blood pressure and other measurements. These notes can also include important instructions about medications, and the doctor's impressions of your health condition. There's a growing movement amongst hospitals and doctors to make these notes easier to access.

That movement is called OpenNotes, an organization that aims to make notes more readily available to patients and their caregivers. The hope is that patients can take a more active role in their own health care. To find out more about OpenNotes, we spoke with Dr. Joann Elmore a professor of medicine at the University of Washington, and a physician at Harborview Medical Center, one of the first medical centers to adopt OpenNotes. In this episode, Dr. Elmore explains the OpenNotes Movement.

You can listen to this episode with the player above, on iTunes or on Stitcher, or read the full transcript below.

Links and Resources

Jeremy Solly (JS): Welcome to the HealthChangers podcast, presented by Cambia Health Solutions, where we share real stories of health care transformation from those experiencing it, and those helping to make health care more personalized. I'm your host, Jeremy.

Whenever you get a checkup, or go to the ER, there's a doctor or a nurse on hand, typing notes about your health into a computer. They are often recording things like your weight, blood pressure. These notes can also include important instructions about medications, and the doctor's impressions of your health condition.

There's a growing movement among hospitals and doctors to make these notes easier to access. That movement is called OpenNotes, and it aims to make notes more readily available to patients and their caregivers. The hope is that patients can take a more active role in their own health care.

To find out more about OpenNotes, I recently spoke with Dr. Joann Elmore. She's a Professor of Medicine at the University of Washington, and a physician at Harborview Medical Center. Harborview was one of the first medical centers to adopt OpenNotes, and I asked Dr. Elmore to explain the concept.

OpenNotes: A Movement Encouraging Transparency

“When they shared their vision with me, I just said, ‘It's the right thing to do.’”

Joann Elmore (JE): Every time you come in and see a doctor or a nurse, or a nurse practitioner, these doctors write notes. We describe why the patient came in, what they were reporting, what our physical exam showed, what medications they're on, what are our assessment, and also what the plan is, what we hope the patient will follow through with, what medications, what lab testing, et cetera, is recommended.

I need to say that OpenNotes isn't an app. It's not a product, it's not for-profit, we're just a movement. We are a group of physicians, investigators, patients, staff. We care about health, we care about health care, and I think we can do a better job.

JS: How did you get involved with OpenNotes?

JE: Well, I met these brilliant individuals by the name of Professor Tom Delbanco, and Jan Walker. They had this vision for OpenNotes and when they shared their vision with me, I just said, "It's the right thing to do." I had been leading our general medicine division here at our county hospital, where we provide care for vulnerable patients, we take care of anyone regardless of their ability to pay. This is called Harborview Medical Center, our hospital.

And there's often a digital divide where these sort of new technologies are not made available to my patients, and that frustrates me. Tom Delbanco and Jan Walker wanted to involve our hospital, and so they brought us in as one of the first three original research sites in the OpenNotes.

We actually held focus groups with our patients before we became involved, and I wanted to see, "What do my patients think about this? Would they be willing? Would they be engaged? Would it be challenging for them?" Some of them didn't even know the doctors wrote notes, some of them didn't have computers, but they all said, "We can go to the library and use the computer there." They all said, "We want it." So we were involved as one of the first three sites.

How OpenNotes Changes Patient Experiences

“OpenNotes gives me the opportunity to sit back and review what I heard at the doctor's office, and to digest it.”

JS: You said earlier on that this isn't an app, it's not necessarily a product or a service, it's a movement. Let's say I'm a patient and I'm going to go see my provider or work with my insurer. Describe to me a little bit about what the experience might be like if that provider has adopted OpenNotes. How could it be different from one that maybe doesn't?

JE: In a typical appointment, the patient shows up as they're getting checked in—this is at non-OpenNotes sites. They're getting checked in, the medical assistant checks their blood pressure and heart rate, and types that in, and they ask them a few questions. Then, the medical assistant will just type one or two words in, even though they may have spent 10 minutes talking with the patient. Then, the patient will be put in a room with me and we'll talk, and I will explain at the end of the visit what my assessment and plan is.

The patient leaves, we do try to print out materials to give them, to help them with some of our general recommendations and list of their medications, but the patient goes home, and they lose the paper. They've done studies showing that get home, and you can't remember what the doctor said. So, in an OpenNotes environment, it's quite different, we hope.

JS: Let's hear what this experience is like for a patient. Here's a patient, Ellen, and how she described her doctor's experience with OpenNotes.

Ellen (patient): OpenNotes gives me the opportunity to sit back and review what I heard at the doctor's office, and to digest it. If I forget what was said about the medication, I can go back and see what medication, and what the dosage is, and all of the things that I'm supposed to know are all recorded in that note.

Improving Patient Engagement and Communication

“The patient is activated and ready in a very different way.”

JS: So helping you remember what happened at your appointment and then it's probably helpful for the next I would think.

JE: Or they might even email their doctor, "Here's my summary of how I've been. Here's the three things I want to talk about at my next appointment." Then, when they come to see the doctor, that information is available, or the patient is activated and ready in a very different way. You know, when they come in, they've already looked at their medical record and they can see that there's a list of 17 medications, and three of them are wrong. If my patients came to me with that information, that would save me 15 minutes. Then, I could get to what to me is important, which is the art of clinical practice. I could actually talk with patients, I could spend more on the examination, we could spend more time discussing the plan and how to really help the patient.

JS: It seems like the concept and the movement around OpenNotes is really this coordination between the patient and the doctor.

JE: Coordination, communication, engagement, activation. It's everything all wrapped up. Here's an example of how OpenNotes can be helpful. When patients are in the hospital and they're discharged, there's a whole discharge meeting and a lot of paperwork that you're given.

Providing Transparency and Access for Caregivers

“The idea of being a caretaker and how it would help me to do a better job helping my mother, that caused me to want to push so that we have a caregiver portal.”

I flew down to California to help my elderly mother with her discharge from one of her hospital stays, and I'm a doctor, so you would think I would have done a better job, but I go in that morning and pick her up from the hospital, get all the paperwork, and get my elderly mother out through the wheelchair, out to the car, get her home. I could not find the paperwork, and having access electronically, anytime, anywhere, boy that would be helpful.

The idea of being a caretaker and how it would help me to do a better job helping my mother, that caused me to want to push so that we have a caregiver portal here in Seattle and it is easily accessed, the patient can give permission to a caregiver. The caregiver has their own login and password, the patient can block things if they don't want the caregiver to see them. And we've done research on it. We've done focus groups, we've done survey data, and this is something that I think has been very helpful.

JS: I'd like to share another patient's story. It features a woman named Linda who had a medical emergency when she was away from home. OpenNotes made it easier for her daughter, Linda's caregiver, to give advice from afar.

Linda (patient): I did have a medical scare. I was on the East Coast. I had OpenNotes, and I could give it to my daughter and my daughter could call my doctor. They were able to have a conversation and they could talk on my behalf, her reading this information, but also talking with my doctor. What I want my doctors mostly to know about me is that I want to be involved in my care, and I also have a family who's going to get involved, too.

Getting Help from Patients

“I think we need their help and this is one way of working together.”

JS: Notes that are accessible and transparent to not only patients and doctors, but caregivers as well, involving all of these relevant people in a patient care demonstrates the real benefit of OpenNotes. Dr. Elmore, what's most important to you about OpenNotes?

JE: I think we can do better in medicine. The patients can help us. I think we need their help and this is one way of working together. I can see that we're going to have problems going forward in that the doctor's notes, they aren't completely a work of art.

Historically, as a doctor, they were handwritten historically and they were initially just a note to myself, to tell myself what did I think about the patient's severity and prognosis, et cetera. Then, as medicine got more complex, the notes were meant as a way of communicating among doctors. Patients go to different health care systems and so we need that information, I need to know what the cardiologist in another city thought, and what was the result of their testing.

Then, the notes became even more complex as they started adding in more material. They added in quality checks and they added in billing information, and now with the electronic medical records, there's unfortunately a lot of cutting and pasting. Some of the notes now are really long. I had a patient that was seen in the cardiology clinic and the note was 28 pages long. I looked through the 28 pages to try to figure out did they want the patient on a specific medication after the patient had had coronary stents in? I couldn't find that answer in 28 pages.

Patients Pushing for Better Notes

“We do have a problem in that the notes are, I guess I would even say they're messy. I think we need to do better.”

As another example, I had a patient come in, I wasn't in clinic and so they were seen by another provider. Very simple, in and out, less than five minutes. They had earwax, cerumen, so that should be a short note. That note was 13 pages long. We do have a problem in that the notes are, I guess I would even say they're messy. I think we need to do better.

I'm hoping patients will push us to do better, but then there's another worry I have. When I see patients in clinic, there is an important connection. We look patients in the eye, at least hopefully doctors still do, and I say hopefully because sadly a lot of patients do not get to look their doctors in the eyes, because the doctors are simply looking at a computer screen and typing. But when patients come into my clinic, I like to look them in the eye, I want to talk with them and communicate, and the voice, the movements of hands, there's so much that goes into our communication.

Now, we're adding a new component to the communication which is written text, formatted, a lot of abbreviations, and we are not taught in medical school how to make that part of the art of medicine, the written note. We are taught in our medical training to use certain language that may seem derogatory to patients. We, as providers, we need to change what we do. That may take us a while to get caught up. Hopefully the medical schools will change the training.

JS: So you have to change the way that you talk and ...

JE: The whole culture, the whole training. What we write. It's black and white. It can seem harsh, and we use abbreviations. I say, "Normal BS." That's bowel sounds, BS. "No SOB," no shortness of breath. Well, one of my colleagues, her husband was seen by his provider and he was described as semi-athletic. He was a little upset by that. He's a healthy man and he was described as semi-athletic. Some patients don't like when they see the word "obese" and this was the first time that they'd ever seen that they fit a diagnosis of obese. It's actually been helpful in many ways, but there are some patients that don't like that.

Some providers are worried about the effect, but also as I write the note and I try to sometimes, if possible, write it with the patient, I'll show them what I'm typing. I'll turn the screen towards them and I sometimes will pause and say, "What should we type here? What are your symptoms?" They'll help me.

Patients Taking the Lead in Taking Notes

“She took the keyboard for me and she said, ‘Okay, what do I type?’ She says, ‘I'm going to help you.’”

One or two examples, I was in clinic with a patient and it was about two years ago. I was struggling, trying to type the clinic note. I had the screen turned towards her and I asked her to please not laugh at my typos, because I'm not a great typist, and as we were going along, she just paused and she said, "Doc, hand me the keyboard. You're too slow." She took the keyboard for me and she said, "Okay, what do I type?" She says, "I'm going to help you."

I said, "Well, this is where we say how you've been and we type how you've been since the last visit," and she says, "Got it." She's typing about her grandchild's wedding, and her aches in her back, and it was marvelous. She gave me the idea how to try to work with my patients to help us co-generate notes. It's something that Jan Walker at Boston is taking the lead on, and we're trying to see if we can get electronic health record systems to join this movement, because right now, there's a lot of technology challenges. But we just did a simple project where I had a wonderful medical student and we worked with my patients here at Harborview.

One of them had had a stroke and had difficulty moving one hand, and I didn't even know if he'd be able to type, and he typed a note. It was short, it was brief, but patients liked it. They typed the first part of my clinic note.

OpenNotes Represents a Big Cultural Change

“This has become an international movement, so it's not just happening here in the US. It's happening doctor clinic by doctor clinic, health system by health system.”

JS: As we've been talking about, getting more patients involved in this process and being a partner in care, and co-generating notes, I'm reminded of a Seinfeld episode. You probably know which one I'm talking about ...

JE: I know this one.

JS: Where Elaine has to rip the notes out of the doctor's hands, and it feels, I may be dating myself because I'm sure that's 20 years old, that episode, maybe more, but it seems like we are now making a big cultural pivot. Where the doctors were not sharing these notes and hoarding them close to the chest, and now we're at this point where we really want to be open and transparent and have this shared cogeneration of notes, right? For better outcomes, for better health outcomes, right? From what I understand. That's a big change in 20 years, I think, cultural change.

JE: Major, major cultural change. Not everyone's ready for this.

JS: Yeah, that's my question. Where are we at as a society in accepting that transformation?

JE: Well, this has become an international movement, so it's not just happening here in the US. It's happening doctor clinic by doctor clinic, health system by health system. As with any new innovation, you have the early adopters. I was just lucky and privileged. I see patients in the Pacific Northwest, here at the University of Washington, and our senior leadership just made the decision. We were just going to do it. Now, it is a patient's legal right in the US to have access to their notes. Sadly, it hasn't always been easy for patients to access this, and sadly, patients are often even charged on a per page basis, to print out these pages.

Overcoming Challenges for Patients’ Rights

"My comments for the providers, just do it. Don't be afraid. My comments for the patients are try it. You might like it."

In the end, it's actually the patient's right to have this, and I think if we could make it easier for them to access, it just makes sense, especially with all the potential added benefits. There are some vocal physician groups or physicians that may say that they're worried about it. We don't have that problem here in Seattle, where our psychiatrists were early adopters of this, and they thought it would be therapeutic and helpful for their patients to read their notes. But there are some health systems where with mental health patients, the thought and concern is that this might increase their anxiety. There are some providers that worry about patients with chronic pain, and the narcotic users.

I work at a county hospital, we have a lot of patients with chronic pain on narcotic contracts, and I think when they see what I've written in the notes, I think it's helpful to them. They see that I care, that I'm worried about them. They see that I'm worried about the risks of taking the narcotics for chronic pain.

And then we have a few patients that have violated our narcotic contract. I remember one patient who read their clinic note and they said that their mother had died. This was like the third or fourth mother that had died, as a reason why they needed to pick up their narcotics earlier. When this documentation is in the chart and the patient sees it, they realize they don't have the wiggle room, but they also realize, hopefully from what I've said, that I care and I want to help them. A lot of physicians are worried about patients on narcotics and chronic pain.

JS: That's a valid concern. I've got to imagine that doing OpenNotes, even if you're a provider and the different health entities that a patient might interact with, even if they've all adopted OpenNotes, there's probably still segments of our population that there's still barriers. What if I don't have a computer or access to internet? What if I don't speak the language and there's language barriers? I've got to imagine that there's still a lot of work.

JE: The technology is getting there. We now can access our electronic health records from our phone. I just downloaded the app today.

JS: Great.

JE: So I can review my patients' notes on my secure phone. You discussed patients who speak other languages—I think this will be beneficial to them. For a decade, I helped run interpreter services at our hospital and they had interpreters in 92 different languages. Some I had never even heard of, and for these patients, you now can take the text of a note and insert it into an auto-translate program, and it can be translated automatically into that patient's language.

JS: All right, I've just got one more question for you. What would you ask of people listening today? What could a doctor or a patient go out and do today to help the OpenNotes movement?

JE: My comments for the providers, just do it. Don't be afraid. My comments for the patients are try it. You might like it.

JS: Well, thank you so much for your time today, and we really appreciate talking with you.

JE: Oh, it's been my pleasure.

JS: That was Dr. Joann Elmore, Professor of Medicine at the University of Washington in Seattle, and a physician at Harborview Medical Center. Thanks for listening to this episode of HealthChangers.