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ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors who care for people with cancer.
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In today’s podcast, Dr. Timothy Gilligan and Liz Salmi will discuss their article “Patient-Clinician Communication Is a Joint Creation: Working Together Toward Well-Being,” from the 2018 ASCO Educational Book. They cover several ways people with cancer and members of their health care team can work together in order to improve their communication, including a study on sharing clinical notes with patients, a recent guideline from ASCO on physician-patient communication, ways to address religion and spirituality, and tips for patients.
Dr. Gilligan is an Associate Professor and Medical Oncologist at the Cleveland Clinic Taussig Cancer Center. Ms. Salmi is a brain tumor survivor, and Senior Strategist in Outreach and Communications for OpenNotes.
Published annually, the Educational Book is a collection of articles written by ASCO Annual Meeting speakers and oncology experts. Each volume highlights the most compelling research and developments across the multidisciplinary fields of oncology.
ASCO would like to thank Dr. Gilligan and Ms. Salmi for discussing this topic.
Dr. Gilligan: Hello, my name is Dr. Timothy Gilligan from the Cleveland Clinic. I'm joined today by Liz Salmi of OpenNotes and the Beth Israel Deaconess Medical Center. In this podcast, we will be sharing some key points from our 2018 ASCO Educational Book article titled “Patient-Clinician Communication Is a Joint Creation: Working Together Toward Well-Being.” I would also note that Dr. Andrea Enzinger from Dana-Farber was an author on that.
So, Liz, we were going to start with talking about your piece on this, your work with OpenNotes. And for those who haven't heard of this, the idea is making progress notes openly available to patients so they can read the progress notes about their medical care. Can you talk a little bit more about what OpenNotes is and what's at stake here?
Liz Salmi: Sure. Absolutely. Thanks for that intro. And I just want to say my role at OpenNotes—I do outreach and communication work, but, also, I think it's important for the audience to know that I am also a patient. I'm a person living with a malignant brain tumor or brain cancer. And I'm now a 10-year survivor, but I'm still living with active disease. So what I'm talking about today is not just part of my job, but it's also very personal to me. And so what you just kind of gave me a lead-in on, is explaining what OpenNotes is, but I do want to repeat a little bit about that. So OpenNotes is now a national movement that stems from real medical research, and it's a movement dedicated to making healthcare more open and transparent by giving people—or patients—access to their doctors' notes via existing secure online patient portals.
And when I say that, I want to make it clear that OpenNotes is not a product, or it's not a piece of software. It's more of just a concept of let's give patients full access to their medical records. And when we talk about OpenNotes, a lot of patients will say, "Well, what is a doctor's note?" Right now, I, as a person, can login to my digital online portal to email with my doctor, or, say, set up appointments, or order prescription refills. And sometimes, after a visit I can see a visit summary of a little bit of what transpired at my visit with my doctor. But what I don't see is my clinical notes.
Now, clinical notes, a lot of people and patients don't realize that after every clinical visit with a doctor, they go back to their office and write up these really detailed notes of everything that transpired during the visit. But most patients, about 93% of the US population, don't have access to this information. And it's a bummer because that information is so detailed. And as a person living with cancer, I'm kind of dealing with something that's emotional and overwhelming, and most people can't remember everything that their doctor says. And most doctors keep track of all of this in their clinical notes.
And OpenNotes, as a research project, was looking into what would happen if we gave people or patients easy access to those clinical notes that the doctors write. Would they understand those notes? Would they get some sort of benefit or value out of it? What would doctors think about that? And so I want to talk about what that original study is, and I'll hopefully try to do it quickly. But OpenNotes started as this research project. It was conducted in 2010, the first project, and it has now been replicated at multiple sites around the country. The original research was done with over 100 primary care doctors and 20,000 patients. And we tested this concept of sharing notes at 3 sites, at the Beth Israel Deaconess Medical Center in Boston, at Geisinger Health in Pennsylvania, and at Harborview Medical Center in Seattle.
And at the beginning of the project, they asked all the clinicians who'd be sharing their notes, "What do you think's going to happen?" And the doctors thought, "Gosh, we write these notes at such a high level because it's a communications tool with our other colleagues. And we don't think our patients are going to really understand what we're writing. And we're also concerned that patients might be afraid of what they read because there's all kinds of stuff we capture in there." And they also surveyed those patients. Before they received their notes, they surveyed them and said, "What do you think's going to happen? You're going to now read your notes for the next year. What do you think?" And patients, even people like me, were like, "I don't know what to expect. I've never seen this type of information before."
So fast-forward to a year later, and what they found was that during that year about 80% of patients read a note, and 75% of patients reported benefits. They felt like, "Wow, if I can read my doctor's notes, I feel more engaged in my care. I better understand why certain medications were prescribed to me. I felt like I had more control over my care." Sharing the notes improved the doctor-patient relationship. 99% of patients felt better or the same after reading just one of their doctor's notes. They felt they could trust their doctors more. And, just like regular people, sometimes doctors make mistakes. And sometimes those mistakes would transfer to their clinical notes, and patients, when they're reading those notes, were able to point out errors. For example, the doctor might write, "There's a problem with your left knee." And the patient will say, "Actually, I was talking about my right knee." So there was this opportunity for a little bit of quality control.
Dr. Gilligan: Well, thank you. So you've outlined, obviously, some of the benefits to patients in terms of direct access to information, the opportunity to correct mistakes, the chance to feel more empowered. I'm curious. Often, we hear from clinicians fears that this is going to generate a lot more phone calls or problems, or patients will get upset. Can you talk just a little bit more about what the research has shown in terms of what has actually happened when this has been turned on, so to speak?
Liz Salmi: Absolutely. So we've learned a lot. They're concerned that by sharing their notes, it's going to increase that doctor or other clinician's workflow, meaning if a patient reads a note and anything about it is unclear, or maybe there's a word and phrase they don't know, it's going to trigger an email or a phone call back to the doctor. So mainly, the concern is workflow. And we've seen—and it continues to show—that workflow does not increase. W
hy is that? Well, often, a patient will go to a visit, leave that doctor's visit, and then later go, "Oh, my gosh. I can't remember what my doctor said." If they don't have access to their notes, that triggers an email or maybe a phone call saying, "Oh, hey, Doc. I can't remember. Did you tell me to do this or that?" or, "How many times am I supposed to take this medication?" or, "How many exercises do I need to do each week?" or, "What was that thing you said?" With OpenNotes, patients can actually go back to the doctor's notes, the exact record of that interaction, and refer to the note itself. So that decreases the need for another email or another phone call.
Occasionally, a patient might read a note and have a question that the note triggers. So then they might follow up with a question through email or a phone call. So the 2 kind of cancel each other out, and, overall, you don't see an increase in workflow.
Also, they’re worries that most doctors have in advance of sharing notes. "Oh, my gosh. I think my patient is going to read what I write, and they're going to get stressed out by it." But that never happens. And what is written in a medical record and in a note is what the doctor actually says to the patient. So there shouldn't be any new information, necessarily, in the note. An interesting thing to think about is that after that original study, all the doctors who shared their notes after that entire year were allowed to stop sharing their notes, but not a single 1 did. They were like, "Oh. This is working out for me. My patients seem to like it. So I'll keep going."
Dr. Gilligan: So I want to use that as a segue because we have two other subjects we need to cover in this podcast. Both in the article and in the session we did, we talked about the new ASCO patient-clinician communication guidelines, the first guideline that's been published. And that was published late 2017.
The guideline was broken down into 9 key areas that we thought were important. One was just core communication skills. How do you have the conversation in a better way?
One thing that's often unappreciated is that a lot of Americans have low health literacy. They have low numeracy. If we say to a patient, "There's a 30% chance of this or that," that may sound very obvious to us what it means, but it often is misinterpreted. And even lay persons, what we might consider average or normal numeracy or literacy, don't take in the numbers they get from healthcare professionals as fluently as they think they do, and there are better and worse ways that have been studied of doing that, and we talk about that.
Cost of care is a new issue. Bankruptcy from healthcare is a large problem in this country. There's a lot of unaffordable drugs out there, so how to talk about that is an issue that comes up in it.
Underserved population is a concern that we address, whether it's racial or ethnic minorities or other underserved populations. The LGBT community and their healthcare needs is increasingly recognized, and ways in which they encounter challenges in the healthcare setting a problem, so we talk about that.
And then lastly, the issue of how do we train people to get better? There's been a lot of research in how people improve in communication, and I think the big take home from that is that communication is a motor skill. It's like learning how to play a sport or a musical instrument, and the way people get better at it is by practicing it and then getting feedback so that they can improve.
And then the last piece that I really wanted to get your thoughts about was how do we talk about spirituality for patients with patients? We know that from studies of patients and surveys that the majority of patients think spirituality, whether or not that's formal religion, but spirituality in general, is important to them in coping with serious illness, and yet it's something that many providers feel unprepared or unskilled at in terms of bringing up. So in a sense, this links in with the former topic of key communication skills. I'm curious your thoughts, as a patient, what you think about the issue of spirituality and how it can be helpful to patients going through a difficult time.
Liz Salmi: Yeah, no, absolutely. And thanks for clarifying. There's formal religion and then there's just kind of general spirituality, kind of a vague aspect or a way of looking at things. And, I think, as a person who-- I don't attend church, but I do think about how I view my place in the world and as that relates to my cancer experience is they kind of go hand-in-hand.
And when I was first diagnosed, realized I had a brain tumor, and then I had a brain surgery, and I'm laying in the hospital 24 hours later, and a chaplain walked into the room and introduced himself and said, "Hey, I'm the hospital chaplain. And I just want to let you know that I'm here to talk to you." They are basically offering their support. But as a new patient and someone who's never been in the hospital before, I had no idea what the role of the chaplain was. And I told the person. I was like, "Yeah, I don't want to talk to you right now. What are you doing here?"
And they also scared me. The presence of a chaplain, I had only seen from TV that if a religious person came into a hospital room it meant somebody was dying. And I was like, "I just had brain surgery 24 hours ago. They're sending in a religious person to see me. Does that mean I'm dying?" So it freaked me out, and I told the person, "No, I don't want to see you. Please leave." And then when the nurse came in to check on me, I said, "What was that all about?" and the nurse says, "Oh, if you don't want a chaplain to come see you, I can make a note to not have them come see you again." I said, "Yeah, please do that."
So, actually, in my medical record, someone made a note in my inpatient notes, "Patient refuses chaplaincy services." And it wasn't until 2 years ago, so like 8 years after diagnosis and that first brain surgery that I learned a chaplain is non-denominational. They're there just talking about psychosocial, spiritual issues, that it has nothing to do with a particular religion at all. They're just there to help. And I think it's a bummer and a disservice that I didn't find out until eight years later when, really, I probably could have benefited from having someone to talk to from that perspective.
Dr. Gilligan: I think the promise here is that if we feel confident that we have the tools to do this, and we know how to have the conversations, and then we start having them, we'll be taking better care of our patients because they're telling us in surveys over and over again that this is important to them, and it would help them if they could talk about it. But it has to be done in a skilled way. And as your story, Liz, tells, if it's not done that way, then it can be unhelpful. It reminds me of Rana Awdish in her book In Shock talks about story where she wakes up in the ICU, and she's getting last rites. And that's not really the way you want to be introduced to a priest [laughter].
Liz Salmi: No way. That's wild.
Dr. Gilligan: It was kind of shocking to her at the time. Obviously, she survived to write about it, thank God.
Liz Salmi: Well, you talk about these communication guidelines, which are for doctors to help them better understand how to communicate well with patients, but I was just curious if you have a couple tips for the listeners who, mainly, are patients for this podcast. What can patients do to help ensure smooth communication with our healthcare team? Do you have any tips for us if we want to kind of take control of situation a little bit?
Dr. Gilligan: Yeah, no, that's a great question. So 1 of the things I find interesting about that is that in the early research on the impact of communication on patient medical outcomes, it was documented very early that outcomes in managing high blood pressure, managing diabetes, other hard medical outcomes, not the more patient-satisfaction, softer stuff-- that hard outcomes improved if you either taught clinicians to communicate better or taught patients to communicate better. Either one has a positive impact on healthcare, so it's very appropriate to ask. The reason we focus on training clinicians is there are many fewer clinicians than there are patients out there. Training all the patients in the world would be a lot of people to train.
I think the most important thing is to come organized, to have it very clear what your priorities are, and what you're hoping to accomplish, and to try to lay that out early in the appointment. And it's helpful for us clinicians to know, but it's also helpful to advocate for yourself if you come in with a clear sense of what your goals are and what you're hoping to get out of the encounter.
I think the other thing I would say is it's really helpful to bring someone with you. I think if I'm ever in the hospital, I would want a family member there. And if I ever have a family member in the hospital, I'm going to be there, too, because in the modern healthcare system you need to advocate for yourself. And so I think being prepared and organized is one way you can advocate for yourself. Bringing someone with you can help, as well.
The last thing I would say is the model of communication skills that we teach is really built around building stronger relationships between clinicians and patients. And I think that, on both sides, it's a 2-way street, that relationship. If we both pay attention to the fact that we will work together much more effectively if we have a strong relationship, then we can try to communicate with each other in a way that helps build that up.
Illness is stressful. People get upset. They get angry, and all that is natural. But the more we can remember that, in the end, we're on the same team, we're kind of rolling the same direction. I usually find myself saying this to clinicians to try to avoid getting into unnecessary conflict with patients. But I think also, too, on the patient side. So those would be the 3 things I would really think about: being organized, bringing a family member with you when possible—I realize it's not always possible—and then paying attention to the nature of the relationship and attending to the relationship, not just the work that you're trying to get done. There's certainly more I could say, but it's a big subject.
Liz Salmi: Yeah, no, absolutely. And thank you for that. It was really helpful. I know, from an OpenNotes perspective, we often realize that access to information also helps ensure smooth communication. And when doctors and patients are on the same page and able to look at some of the same information, a patient's level of understanding increases. And it helps us make better decisions overall.
Dr. Gilligan: I agree, 1 of the things I like about giving patients more access to information is 1 of the things I, in a sense, challenge patients to do is to take more ownership over their own care. They should know what medications they're on, and they should know why they're on them, and they should know why they take them. I don't say that in a critical sense, but just if it's me, and someone has me on medication, I want to know why, and I want to know which drugs I'm taking. And keeping track of that, I think, taking more ownership over that, and really knowing your medical history to the best extent that you can helps you get better care in our system.
Liz Salmi: Yeah. Absolutely. High five on that one.
Dr. Gilligan: Well, it's been great talking to you again, and--
Liz Salmi: Same. Yeah, and thank you. It was a pleasure to get to write this article with you in the ASCO Educational Book, which, I believe, anyone can read at ASCO.org/edbook.
Dr. Gilligan: That's right. That's right. So look it up, take a look. We hope that you enjoy it. Thank you for listening to our podcast.
ASCO: Thank you Dr. Gilligan and Ms. Salmi. Please visit ASCO.org/edbook to read the full article. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.
Cancer.Net is supported by ASCO’s Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.
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