Dr. Fumiko Chino talks with Dr. Aditi Singh and patient advocate Liz Salmi about how this essential tool for documentation could be optimized to be more patient-centered. This discussion will be based off the JCO OP article published in late 2024, “Re-Envisioning the Electronic Health Records to Optimize Patient-Centered Cancer Care, Quality, Surveillance, and Research,” on which Dr. Singh served as the lead author.
TRANSCRIPT
Dr. Fumiko Chino: Hello and welcome to Put into Practice, the podcast for JCO Oncology Practice. I'm Dr. Fumiko Chino, an Assistant Professor in Radiation Oncology at MD Anderson Cancer Center with a research focus on access, affordability and equity. On today's episode we'll be discussing our friend, the Electronic Medical Record and how this essential tool for documentation could be re-envisioned to be more patient centered. This discussion will be based off of a JCO OP article published in late 2024 called, “Re-Envisioning the Electronic Health Records to Optimize Patient-Centered Cancer Care, Quality, Surveillance, and Research.”
I'm excited to welcome two guests, the first author, as well as a patient researcher advocate, to the podcast today. Both are passionate about improving how we use the EMR to communicate and provide care.
Dr. Aditi Singh is an Assistant Professor in Clinical Medicine and Hematology Oncology with a focus on thoracic malignancies, particularly neuroendocrine tumors of the lung. She also serves as the Director of Clinical Informatics for the Abramson Cancer Center at the University of Pennsylvania. Her work focuses on optimizing the EHR to enhance provider efficiency and provide high quality cancer care. She also serves on the NCCN Guidelines Committee for non-small cell lung cancer, thymic malignancies and mesothelioma.
Liz Salmi is the Communications Inpatient Initiatives Director for OpenNotes. In this role, she helps clinicians, hospitals and the health system understand the changing nature of patient-clinician communication in an era of growing transparency. As a person living with a malignant brain tumor, she is active in research and advocacy to ensure that the patient voice and patient-centered care is prioritized.
Our full disclosures are available in the transcript of this episode. And we've all already agreed to go by our first names for this podcast today.
Aditi and Liz, it's so great to speak with you today. I hope you guys are both staying warm.
Dr. Aditi Singh: Hi. I'm very happy to be here.
Liz Salmi: Thanks for having me back.
Dr. Fumiko Chino: Our topic today is about how we make the electronic medical record more patient-centered. To start it off, I'd love to actually ask a hopefully non-controversial question to both of you. What is patient-centered care? How do you personally define it? Are there key characteristics or is it something that it's commonly mistaken for? Or is it like the Supreme Court's definition of pornography - ‘I know it when I see it’? Liz, do you want to take that first?
Liz Salmi: Sure. Yeah. So, I've been living with a malignant brain tumor or a grade 2 astrocytoma for 17 years. And when I first got into this space, I'm a person with a communications background originally, so when I would hear that term, I'm like, “Yeah, of course, patient-centered care - like what were you doing before that?” And then in the last 11 years I've been working in healthcare and the last eight years specifically with the OpenNotes team at Beth Israel Deaconess Medical Center. So, when I would hear that term, I was like, “What were they doing before that?” Like still even more frustrated. So, it to me sounds like jargon, like a bad form of jargon. And I think that there's new words we could be evolving into over the next, say, decade, maybe sooner.
Dr. Fumiko Chino What are those words, actually, just out of curiosity?
Liz Salmi: I want to co-design that with patients.
Dr. Fumiko Chino: I love it. So that's still a work in progress. I love it.
Aditi, what's your take on patient-centered care?
Dr. Aditi Singh: I couldn't agree more. It should just be synonymous with good care. It should just be very obvious. It's a no-brainer. In 2025, it's sad to me that when I was thinking about this question, I'm thinking, “Yeah, what did we do before that? What is it called? What is the opposite of patient-centered care? Shouldn't certainly not be provider-centered or like hospital-centered care.” So, I'm all for it. I'm glad that this generation of medical students, nursing students, everybody's going through learning this concept, even though it should really be something just so organic. But I'm glad that we're putting an emphasis on it, that there is no other way. This is the only way of providing good care. The more agency patients have and for them to be empowered to fully participate in understanding their care, fully participate in their care, I think that's what it means to me.
I think sometimes I see misinterpretations of it in the sense that, well, that means that everything the patient says I have to do as a provider. And I feel like it's a partnership, it's not a restaurant where they're saying, “Okay, I want that. And I just make this up.” It obviously has to be within your professional understanding. You're still trying to do the best for the patient in front of you. But within that, because we know there's so much gray area in medicine, not everything falls neatly in our evidence-based guidelines and algorithms. That's really where all the nuance is and that's where we can do a better job at taking care of people, if we work together.
Dr. Fumiko Chino: Absolutely. I think you said the key word for me, which is ‘partnership’, because it really is. It's not like the patient as a consumer, it's a partnership. And I think patient-centered care for me really emphasizes this concept of shared decision making. And again, yeah, it blows my mind that this is like a newer concept that we didn't really, in the paternalistic world of healthcare, the patient was just sort of an afterthought. It was the receiver of care and not the person who was living with an illness.
Liz Salmi: Just to throw in there, there's a very well-known palliative care thought leader, Dr. Ira Byock, who wrote a book called The Best Care Possible about patient-centered care, we could say that, or ‘the best care possible’. And it's a bummer that ‘the best care possible’ was coined and really developed by a palliative care doctor. And I hope people in the oncology community will pull a page from the playbook of all of palliative care, because to me, all of oncology care should be palliative care and that's disease treatment but also pain and symptom management. So, I just got to throw that shout out to all of palliative care in this podcast.
Dr. Fumiko Chino: 100%. I feel like there's a lot we can learn from palliative care for pretty much everything that we do in medicine, including enhanced communication.
Aditi, do you mind giving us a quick overview of the article that your multidisciplinary team published in JCO OP last year about how to make the EMR both more patient-centered but also work better for research and surveillance? I'd also just really love to hear about how you got interested in this topic altogether.
Dr. Aditi Singh: Yeah, absolutely. So, the National Cancer Policy Forum convened this workshop in 2022. It's a two-day workshop which focused really on improving EHRs for oncology care, surveillance and research. And we had discussions and talks from various stakeholders, experts in their fields, just putting our heads together and hoping for a better way than what we have. I think there was general agreement that we are very glad for EHRs as an advancement over paper records, but I think we all kind of felt that EHRs haven't really realized their full potential in all the great care that can come through them. And we all identified certain challenges that EHRs have brought with regards to EHRs really being formulated as primarily billing scheduling tools in the 1970s, and now it's this all-encompassing system that we use to do everything. All of our interactions are through the EHR, kind of this like thing that comes in between, sometimes we feel, like us and the patient. As providers, we talk to different stakeholders like oncologists and providers, patient advocates, patients, the federal agencies, EHR vendors. So, all of us kind of coming together, researchers, quality improvement advisors, to really figure out what are the challenges and what we can do moving forward to get to a better place. And I think my own personal journey on how I got interested in EHRs and how to use them to kind of harness their power, so to speak, to provide better care and to improve provider wellness was another one.
I trained in India. My medical training was in India, where the system is fairly traditional and paternalistic. And then moving to the US and seeing just a lot more time spent with patients and involving them in general, there's a lot more we can do. But just coming from a place where there wasn't as much of it, it was really cool seeing that. And then through my training, just watching my colleagues struggle with how much we had to interact with EHRs. I think none of us went into medical school thinking that I'm going to sit in front of a computer all day and spend less time actually talking with my patients or always have this thing in the background when I'm talking to my patients. And so, I think seeing my colleagues and myself struggle through that and hoping for a better way to just achieve that “work-life balance,” or doing what you love without getting bogged down by the administrative tasks that just keep piling up.
And then I think my own life and my own struggles with fertility, having a late miscarriage, having a traumatic birth, and then now being a parent, once you're on the other side, it changes the way you think about these things. And I think being a patient can be so lonely and so scary. Here we're talking about cancer, and you're so vulnerable in that moment. Even as a parent, I say, you know, all your medical training goes out the window when you have a loved one that's sick. You both have beautiful stories on how you've learned from your own experiences. So, I think that was truly telling, that it changes the way you see the person in front of you once you've experienced it yourself. So, I think that's how I got into this space to hopefully move forward.
Dr. Fumiko Chino: There's a quote from the paper which was, I thought, was very telling, which was that “EHR development was driven by regulatory requirements rather than a focus on the user experience.” So that's either providers or patients. They're both using the EHR, correct? It was not really built for either of us on either side of the computer, basically. And so, I love the idea of how there could be steps along with each kind of stakeholder to make things a little better.
Liz Salmi: One thing I didn't necessarily see in the paper was that patients are actually the biggest user of the EHR through the patient portal. And so that needs to be acknowledged as well. And as you said, Aditi, like the user experience of these portals, is not great for clinicians and it's terrible for patients as well. So, I think both patients and clinicians can come together to co-design the future of that user experience for sure.
Dr. Aditi Singh: 100%.
Dr. Fumiko Chino: And that actually segues directly into my next question, which is Liz, to kind of start off by saying, congratulations, you just won this recent award from the Society for Neuro-Oncology. And I know that your day job and your personal passion is to improve communication between providers and patients with this kind of central tenet that patients should be both encouraged and supported to be fully engaged with their medical care. Do you mind just kind of briefly discussing your career arc and how this really intersected with your diagnosis and your medical care for a malignant brain tumor? I know you mentioned a little bit already.
Liz Salmi: Sure, yeah. None of this is pre-planned. It's just all happened. I think clinicians perhaps come into medicine, maybe not all of us, but “Oh, I want to be a doctor.” And then you kind of figure out your path along the way and how you become leaders. I mentioned earlier that my background originally is in digital communications. And then at age 29, I had a massive grand mal seizure and then found out I had a brain tumor. And then jumping ahead, you know what I'm doing today and I can fill in the gaps. But today I work on the OpenNotes team at Beth Israel Deaconess Medical Center, which is one of the Harvard Medical School teaching hospitals. But the OpenNotes team, we've got researchers around the country and around the world, are really focusing on how transparency and transparent communication improves care. And so, when it's some defining words, we say when a clinical note is shared with patients, they become an open note, lowercase. And then our team is OpenNotes, a proper noun. And so, for the last 12 years, and this is before me, I've just been the last eight years, but for the last 12 years, we've kind of created this new field that's focused on research around how open and transparent communications improves relationships between clinicians and patients. And we just remain motivated by evidence that shows that when healthcare professionals offer patients and families ready access to these notes, how that improves actually safety of care as well, because you can spot errors in the record or, you know, just have more open dialogue.
And so how I got here, grand mal seizure, communications, digital design. Really just sometimes people become patient advocates quite often because maybe they had a bad experience, a terrible experience, and they want to fight the system or co-design a thing with the system. I had the opposite experience. I had great care. I just was so curious about what was going on from a neurological perspective, from a neurosurgery perspective, move along around the lines. And then things started to change when I became a patient. It was the ‘do not google the information in your records’ era. We're talking about the 2000s and then late 2000s.
And then my magical change moment is when I had to change health systems and request a copy of my medical record to like the new location. They said, “What do you want from your record?” And I was like, “All of it?” I don't know what's in it because I had really never seen it before. And so, God bless Kaiser Permanente Northern California for really giving me all of the record on like a DVD. And I had to pay for that. And so, I, of course, as a curious person, just threw that DVD into my computer and started looking at a 4800-page medical record. And I was like, “Oh, my gosh. They've been talking about me this whole time.” I'll try to summarize it now, but I just didn't know that notes were part of the thing. And so that ultimately launched me to the OpenNotes team, the OpenNotes journey. Finding out that researchers at other hospitals are starting to study that. And so, I was like, “How do I get involved in that movement?” And so here we are seven, eight years later for me being part of the team and they're so wonderful academic clinicians, it's all about teaching and like training the next generation. So, I've been taught and trained and now I'm involved in the co-design research.
Dr. Fumiko Chino: You know, I think you're underselling yourself because you as a patient PI, I think you've been on the ground floor of this concept of we need to be co-designing research around the patient experience. You've won, as part of your team, multimillion dollar grants to study quality of life and even this, I feel like this most recent award and I am not trying to paraphrase the SNO Annual Meeting, but I think you had asked, “Oh, is there registration or something for patients?” And they're like, “No, this isn't for you.” Advance six years later and they're giving you an award! So, I feel like you've been on the ground floor of all of this very important move towards collaborative work with patients.
Liz Salmi: Thank you for highlighting that. Yeah, I think what I've learned in this experience is if someone tells me ‘No’, I want to work harder to prove them wrong.
Dr. Fumiko Chino: It's that punk rock mentality.
Liz Salmi: There we go.
Dr. Fumiko Chino: Now, there's been a lot of consternation from both institutions and providers regarding the release of test results immediately to patients via the 21st Century Cures Act. These releases may actually even come before the primary team has been able to discuss the results and their clinical context with the patient. And I know a 2023 JCO OP article showed that 75% of surveyed oncologists felt like the immediate release of clinical information had a negative effect on their practice and/or their patients. I've certainly personally seen how the immediate release seemed to have fostered some anxiety for some of my patients. And yet I truly believe, and this is a direct quote from the manuscript, “Health records fundamentally belong to patients.” Liz, I'd love to hear your perspective on this because I know that you were a first author of an ASCO Education Book. The chapter was called “When Bad News Comes to the Portal: Strengthening Trust and Guiding Patients when they Receive Bad Results before their Clinicians.”
Liz Salmi: Yeah, that was a fun one to work on. It's open access, I believe, so people can go find that. But in that book chapter, we cite a couple of papers, specifically one of the papers and anyone can look this up. It's in JAMA Open, so it's open access. But well, we cite our own paper or I cited our paper with wonderful people. I was like fourth author or something like that. So, it's not just me. Saying that, all of those caveats, we cite this paper called “Perspectives of Patients About Immediate Access to Test Results Through an Online Patient Portal.” And what we did with that study is we surveyed patients at four sites around the country and really, we learned, despite clinician reservations, about getting immediate access to these test results, 96% of patients still want immediate access to the test results. And that stayed true even among those who received non-normal test results. Could be scary. And we actually asked them, "How did this make you feel? Were you more nervous? And they said, “Yes, but we still want it immediately.”
Knowing that and knowing that we can't put the genie back in the bottle for Cure's rule and everybody has decided people should have access to their information immediately, there are benefits to people having access to the information. So, if it's a note thing, they can find errors in the record. When it comes to their test results, they can plan ahead. And I think in the oncology perspective, I believe for folks who have an active cancer diagnosis and they kind of understand their current experience like I do, I see these immediate results, I see the immediate MRI results and I'm like, “Yeah, I still know I have brain cancer. That is not surprising to me.” But I think where things are kind of troublesome, is like a new diagnosis or somebody sees something through their primary care, general care setting and then something, probably an imaging result says something worrisome and then the patient is going to Google or use ChatGPT to kind of understand their situation. And I think that this is a situation where, and this was also mentioned in the ASCO book chapter where Daniel McFarland coined the phrase, ‘truth jumping’. What do we do if people have access to all the information, they feel unsupported in their care. And I think that there's a way to mitigate that, especially in like primary care settings where the ordering clinician of that test, whatever that test is, can really create some anticipatory guidance around it and say something very simple when they're ordering the test and I'm pulling a quote directly from a book chapter and other things, but it's like, “I am ordering a test. You might see the result before me. You have a choice, patient. You can look immediately or wait to hear from us. And what questions do you have?” So really laying, “Here's what's happening. Now, I'm ordering the test.” And so, it creates context around.
Dr. Fumiko Chino: Aditi, do you have any additional thoughts about this? About, for example, how to release test results effectively? How could it potentially help or harm their relationship with their oncologist?
Dr. Aditi Singh: Yeah. Before the 21st Century Cures Act, we all had the same reservations that, “Oh, my gosh, having cancer is hard enough! Hearing it through the portal and not through trained physicians or providers who know how to break that news with some empathy and context on immediately following it up with what's next is going to be so jarring for patients. It's going to create so much anxiety.” And I kind of still believe that. Yes, I've seen people who've gotten their results and it has created anxiety and it has been stressful. But at the same time, I think that's their choice. They get to decide that. We're all adults here. Obviously, it's different when you're making a decision for someone else. But we're taking care of adult patients who get to choose. And now you can give, just as Liz said, actually setting expectations as the ordering clinician and saying, “I'm going to order this,” and, again, as an oncologist, most patients, like Liz said, it’s really about, “Is my disease progressing? Is it back?” And patients have understood that they can read that if your impression says, ‘no concerns for cancer’, you kind of get that - they are like, “Okay. I'm good.” Or if there's something concerning, you understand that, and it's not mind blowing. You kind of know, well, there was a percentage of chance that this would be good or bad. I think setting expectations, especially when we think it might be a new diagnosis, that this could be something that is as bad as cancer. If you are getting a colonoscopy, a screening colonoscopy, and we find something there, and the pathology is looking for abnormal cells or cancer cells, you can opt out and say, “I don't want to look at this,” or you can. The other thing I encourage patients to do is just kind of see when their next appointment is scheduled because, I for one, as a patient would hate that I see something online and now I'm not seeing my provider for the next two or three weeks. So, giving enough time, a reasonable amount of time for the test to be read so that I am prepared, so I have had a chance to look at it for the patient so we can have the best discussion.
But at the same time, once the patients understand that, and I think many patients do now, and I have both types of patients, some people say, “I don't look at it until you tell me.” And there's people who look at it and then there is a lot of sometimes back and forth and we try to set these expectations that if this is something bad, if it's something really bad, where I need you to come to the emergency room right now, you're going to be hearing from me. But at the same time, it's nice that patients have that agency where they can say, “Hey, I just want to make sure I didn't get missed because I know you get a lot of test results and I hope you saw this, but this doesn't look good.” You're empowering patients again to fully participate. And if you are someone who finds it helpful to ChatGPT or Google, from reliable sources- that's another thing, as a provider, I can give them reliable resources like, “Hey, this is a good website. This one, not so much. You can look at it and then you can come prepared for your visit and say these are the things I looked up. I have some questions now that I can better participate in this conversation.”
So, I think in general I firmly believe that the patient health record really does belong to the patients. They get to decide how and when they want to look at these things. But just as providers, we can help them set appropriate expectations and boundaries. And we sometimes get a lot of back-and-forth messages and we have to say, “Hey. This is non-urgent. I promise I'm going to talk about this at our visit. But just to provide good care to all my patients, I can't be in a back-and-forth kind of text message about this result.”
And then the other thing is that we can now use cool new technologies like natural language processing and these large language models where we're looking at- one of the things we get a lot is, “Oh, my God. My esophagus has collapsed.” Because that's the normal way for the esophagus to be in the body unless you're eating. So, it would be nice if maybe we could have cool technologies where someone can hover over their test result and kind of translate this to me in something that a layperson can understand who's not in medicine. That includes that your esophagus is collapsed, which is its natural state. Nothing to worry about. So, some of these things we can do better with just technology.
And I think one other thing I'll say is the onus of all of this can't only be on the provider. I think we need to make sure that the providers are supported to do the right thing because it is the right thing to provide patient-centered care and give patients the answers they want and help them through their journey of whatever diagnosis they have. So, if you have competing interests where there's profit-based companies telling you, “You need to fit in more patients and you need to see 30 patients a day and you need to make sure you bill appropriately.” Because none of us are thinking that way. We went into medical school to help people and interact with people. But if you don't give providers the time, they need to have these discussions, the support for some of these questions to be handled by their staff and it can be a triage nurse who can then immediately call the patient and say, “Hey. Don't worry. Dr. Singh looked at this report and she said that this part is totally fine. She's going to talk to you more about it,” but you have to have a whole team that helps the provider do that for them.
Dr. Fumiko Chino: One thing I think that struck me about your article was this idea that by providing more support to providers, so by making the electronic medical record system work better for providers, you are actually making it more patient centered. You are basically loosening up that chokehold that sometimes the EMR has on providers to actually give us more time to have those difficult conversations or to make those phone calls and not just to be constantly documenting.
Now, Liz, I recently read one of your many research articles that you're a co-author on. This one was in a Medical Informatics Journal from 2021 and it showed that after OpenNotes implementation, oncologist notes overall seem to become a little longer and easier to read. Yet some consistent feedback I hear from patients remains that the use of abbreviations and medical jargon stymie their understanding of their notes and their results. Do you have any thoughts on concrete steps that we can do to improve the use of the EMR as a tool to provide patient-centered care?
Liz Salmi: Yeah, for sure. How do we make these portals more friendly? I mean, they're not friendly for the docs and clinicians and they're not friendly for the patients. I mentioned earlier, the biggest user of the EHR through their patient portals is patients, and so these portals have not been designed well at all. Things we can do to make that portal easier for the patient user, knowing that now we have access to this information, we're seeing our test results before our clinicians and then we're going to message our clinicians and ask them questions. Some health systems are actually implementing penalties on patients. Like they're going to get charged for these patient messages and that's still up in the air. But with that in mind and all of that context and the amount of information that's available, some concrete next steps are to get people on the portal before something bad happens. So the proactive thing, people are used to using these tools and then from there you kind of learn the rules of the road or like what's okay or not okay or you kind of learn a bit about, “I know this question could be better asked in the clinic as opposed to through the portal because I've been dinged in some way.” And it's unfortunate to get dinged in some way through those portal things. Or it's like if you keep asking me more questions, this becomes some sort of a digital visit and you might get charged for this. So, like figuring out that murky space, I feel like I'm talking about in a horrible way, but that still is like a place where getting things figured out.
And then the thing is like the things that people like to use, things like social media are sticky and are pretty well designed. The patient portals have not been well designed. Can we pull a page from the playbook of digital tools that are working well that people like? And so that's like another ripe opportunity for co-design. And the people who build the patient portal tools, the people, the EHR vendors, I go to their conferences from time to time. Sometimes I have an abstract that gets submitted and then I get to learn what those vendors are doing and they don't partner with patients in the co-design of those things. I'm just talking about they in general but you can kind of guess who I'm talking about. But they are early phases of you know when I am at the conference and I'm the person who stands up and asks the room, “Did you involve patients in the co-design of your tool?” And they're like, “We're figuring that out.” And so, it's sad that that hasn't happened. So, we could say it's sad for the clinician side but definitely sad from a patient user side especially if like that some of the systemic issues from a clinician strife perspective is, “Ah, my patients are over messaging me.”
And then another thing is we could bake in, we should be doing studies of how people are, especially people with cancers and kind of scarier conditions that make you message more, bake in things about studying what kind of maybe AI related tools to help us when we're in those kinds of scary situations. So, you know, shout out to our team as we are kind of focusing on some studies on that right now. But of course, the study is in progress and I would love to tell you the results right now and then I can't. So, it's like how do you kind of give really from a dissemination perspective how do you kind of say, “We're in progress, this is what we're learning so far.” And so, from the ‘what can we do right now’ perspective as all of these things are going on, the Cares Act has happened, patients can see their test results. But something that has been well studied at least in the OpenNotes universe is we know from 12 years of research and 12 years of studies on the concept of when patients read their notes, they better understand their care and are more likely to follow up with what their doctor said, there's a whole body of work there. And the big tips are to patients and things you could communicate to patients are after the visit's over, reread your note. That is the concrete conversation. That's everything we talked about today. Read it. Encouraging reading your notes after a visit. And then another tip from Liz, super patient advocate, is before your next visit, read that last visit again. It may have been three months, it may have been six months, it could have been a year. Read that before your next visit. Because I know hopefully the clinician is doing that like 10 minutes before the visit. But it's like I'm going to read that and go, “Oh, this is what they said. I totally forgot that. I actually didn't do that or I did and it hasn't been fixed.” So, the idea of reading the note and then reading it again later because that's what the clinician is doing as well. So, it really kind of puts us all on the same page.
Dr. Fumiko Chino: I love it. Aditi, I'd love your perspective on this as well. As a provider, as a researcher, I think fundamentally we often don't think of notes as being education tools for patients and we need to balance this patient-centered care with other advances. Even in your paper, we're trying to get advances in quality surveillance and research. But again, there's this concept that maybe those advances in those things can be very patient centered as well. Where do we go next for this?
Dr. Aditi Singh: Yeah, the culture shift. Because I know a lot of people have said, well, these notes traditionally were not really patient facing. So, we would write a lot of things and sometimes we would take it just too far where sometimes, like I can't understand what my colleague in ophthalmology is saying. I've tried to interpret sometimes hearing tests and I was just like, “Wow, I don't know your abbreviations. Mine are different from yours.” And so, I think it's a good thing that we're in general saying that these notes should be more readable because for everybody, even within the medical community, I think there's been an issue with note bloat. And some of our notes, especially oncology notes, and there's been research on this, are just some of the longest, not necessarily the best quality, notes, but just very long where it's just really hard. When our patients get admitted to the hospital, sometimes a hospital team has a hard time understanding what was going on outpatient. Your note goes on for 30 pages and I can't find out what I need to find out. And same thing for patients. So, I think, in general, it's a good thing to just push increased readability and just teaching medical students and us, as hard as it is to change. But it's a good reminder for me and say, “Hey, I wrote this. Does this make sense to someone who doesn't practice oncology?” And if it doesn't, how else could I say it where it doesn't necessarily take me an extra hour finishing my note, but it's still succinct. It's not going to have all the education that patient needs. I'm still going to have supplementary material that is very specifically patient facing because it will have more information. And then I still have my people resources, my human resources that are going to do a, say, chemo teach visit for someone who's starting a new therapy. And I have my pharmacist who's going to do that, too. But how do we use all of that so that the patient in front of me feels as prepared as they possibly can to get this treatment, go through the scanxiety that comes with scans and go through this journey feeling that they have some sort of– We're all looking for that sense of control where we have none in some of these situations. So just helping each other out this way.
So, I think, yes, absolutely, need to make our notes more readable. We can do some of it ourselves, some of it our technology does. So, we have an autocorrect in our EHR that I use heavily and I still sometimes will write in shorthand and it just auto corrects all the words that I'm used to writing in and it just fixes all of that for me. So, use the technology. And some things we're learning too, and we talked about this in our article too, how certain things we said were using stigmatizing language, sometimes inadvertently, and how some of these biases get perpetuated. And we've just been saying that and now someone said it in a different note that got copied and pasted and now we've just perpetuated this thing that was completely inaccurate about the patient. So absolutely, more power to patients to read that and say, “Uh-uh, that is actually not what I said. And actually, can we have a meaningful conversation on what this meant?” So I do think we can do better as a community and I think if we and the EHR vendor, if they continue to use these newer technology, a lot of us are testing ambient listening and I think that'll be really cool because if I can just sit and look at my patient and not have to type anything, and I have this AI tool that kind of summarizes our interaction and makes sure that we put in all the important information in that patient's note. And then it's a great reference, like Liz said, for the patient and for me when I look at that note next time.
Because there's also research that's shown what the patient says and what you actually type is often you just filter out so many of the things because I'm in my medicine brain, you're filtering out as people are speaking because you're also trained to recognize the worst-case things and, “Not dangerous, not dangerous, not dangerous. Okay, I'm going to write the one that sounds- chest pain. I'll write down funny tingling in your toe that happens like once every once in a while.” I keep on going because I need to also focus on things that I think I can triage in my head. But this is cool. This way we get to hear the whole story and I think have more open-ended discussions as opposed to these short, “Do you have chest pain or not? Constipation, yes, or no?” But actually saying, “Hey, Liz. What's your story? Very different question.
Dr. Fumiko Chino: And I think that just to kind of point to this concept of the patient reported outcome and the tingling in the toe that does happen every now and then but has consistently happened for the last 10 years. I feel like PROs can really potentially actually capture that better.
I would just like to give a little last time at the end in case there's anything that we didn't touch upon that you feel like is really relevant or pressing before we say goodbye.
Liz, anything that we missed?
Liz Salmi: Not a miss, but just a quick thing is a little bit about LLMs or AI tools in the exam room. And I just want my doctors to know that I'm also using those tools. And it'll be an interesting next few years as the patients are users and the clinicians are users and I don't want them to just talk to each other. So how do we design this stuff together?
Dr. Fumiko Chino: Sometimes I feel like patients and providers are just on the world's longest blind date. We're just trying to find enough about each other to have a meaningful relationship.
Liz Salmi: That's cute. I love that.
Dr. Fumiko Chino: Aditi, any last thoughts from you?
Dr. Aditi Singh: I love this quote by Ram Dass where he says, “We're all just walking each other home.” We're a team. That's how I think most of us oncologists think. I love my patients. I want to do what's best for them. I think most of us are that way and I wish for our regulators, our payers, our healthcare systems, to all get on the same page so that- we want more of this. We want more of this interaction, that mutual respect and trust that is just invaluable. And we want all of those other stakeholders to come together and help support this. And I think that support’s the biggest mission here.
Dr. Fumiko Chino: I love that. What a great way of ending this conversation. Thank you so much for this wonderful conversation. Many thanks to both Dr. Singh and Ms. Salmi, as well as our listeners for your time today. You will find the links to the papers that we discussed in the transcript of this episode. If you value the insights that you hear on the JCO OP Put into Practice Podcast, please take a moment to rate, review and subscribe wherever you get your podcasts. And I hope that you'll join us next month for Put into Practice's next episode. Until then, stay safe.
The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.
Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.
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