JCO Oncology Practice Podcast
JCO OP: Put Into Practice highlights new research published in JCO OP related to cancer care delivery, quality, disparities, access. Host Dr. Fumiko Chino, MD FASCO interviews thought leaders in oncology to give listeners practical knowledge that can be used in day-to-day practice along with solution-oriented discussions and care innovations.
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Improving CAR-T Access
11/17/2025
Improving CAR-T Access
Dr. Chino talks with Dr. Navneet Majhail and patient advocate Laurie Adami about CAR-T therapy, an advance cancer treatment that biologically engineers a patient's own T-cells to recognize and kill cancer cells. This discussion will be based off the JCO OP article, “,” on which Dr. Majhail served as lead author. TRANSCRIPT Dr. Fumiko Chino: Hello, and welcome to Put into Practice, the podcast for the JCO Oncology Practice. I'm Dr. Fumiko Chino, an associate professor in radiation oncology at MD Anderson Cancer Center with a research focus on access, affordability, and equity. CAR T-therapy is an advanced cancer treatment that biologically engineers a patient's own T cells to recognize and kill cancer cells. It has shown remarkable benefits, leading to long-term remission or even cure for select patients with hematological cancers that have not responded to other treatments. Primary trials were exclusively conducted in the inpatient setting due to high risk of quick onset and life-threatening toxicities requiring close monitoring and immediate treatment. Advances in symptom monitoring and care delivery have allowed the introduction of outpatient CAR T, which is cost saving and more patient centered. I'm happy to welcome two guests today to discuss this promising operational shift. Dr. Navneet Majhail, MD, MS, serves as the Physician-in-Chief of Blood Cancers at the Sarah Cannon Cancer Network, where he oversees 10 transplant and cellular therapy programs that collectively perform over 1500 transplants and cellular therapies each year. He is the first author of the JCO OP manuscript, "," which was published earlier this year. Ms. Laurie Adami was President of the LA-based Interactive Data's Fixed Income Analytics Division when she was diagnosed with stage four follicular lymphoma at age 46. From 2006 to 2018, she was in continuous treatment and received multiple lines of therapy, including three clinical trials. In 2018, she received treatment number seven, a clinical trial of Kite CAR T-therapy. Thirty days later, she was in complete remission, where she remains today. She is an active patient advocate and legislative policy advocate for several not-for-profits. Our full disclosures are available in the transcript of this episode, and we have already agreed to go by our first names for the podcast today. Navneet and Laurie, it's so wonderful to speak to you today. Dr. Navneet Majhail: Thank you. Looking forward to this conversation. Laurie Adami: Thank you, Dr. Chino. I guess I'm supposed to call you Fumiko. Great to be here today. Great to be alive, first of all, and great to be here on this call. Thank you for having me. Dr. Fumiko Chino: I think with everything you've gone through, Laurie, we all go on a first name basis. Now, Navneet, do you mind starting us out with a short history of CAR T in the US, including the side effects and the precise care delivery needs that were the initial reasons why care was limited to the hospital? Dr. Navneet Majhail: So, Fumiko, you laid an excellent background as to why these therapies are done in the inpatient side and what they are. I mean, it's really exciting, right? These are what we call transformative therapies in oncology or medicine as a whole. You're taking patients with very, very advanced diseases who traditionally would have gone on to hospice, where you can potentially put around half of these patients into very deep remissions, and maybe some of them might be cured of their underlying malignancies. Now, having said that, as you alluded to in the introductions, most of the trials early on were focused entirely on the inpatient space for a few reasons. One was the unknowns. These were early therapies, unknown side effects, you needed to have that monitoring. The second, some of the very early work that was done with these therapies, it was clear you can have some potentially severe and fatal side effects, like cytokine release syndrome, what we now call ICANS, or immune effector cell-associated neurotoxicity syndrome. You have issues such as HLH, hemo-phagocytic lymphohistiocytosis. These are some really fatal, potentially fatal and severe side effects, which really needed close monitoring on the inpatient side. As things have evolved, obviously we've gotten smarter at selecting patients. The constructs have improved as well, where the incidence and the severity of these toxicities has gone down. And as we become smarter overall, both from a supportive care, patient selection and technology perspective, certainly there are opportunities now for us to look at delivering these care where patients can access these therapies better. Dr. Fumiko Chino: That's a wonderful summary, and I know at this point, I believe over 300 sites are Foundation for the Accreditation of Cellular Therapy accredited to deliver CAR T-cell therapy. So, we really have gone very much into the space where we're trying to expand access to these therapies. Now, Laurie, I know that your CAR T was in 2018 on a phase two trial at UCLA, but your treatment started in 2006. Do you mind walking us through what that was like for you? How did it go? What was required in terms of travel, time, for, I know, again, just not just yourself, but also your family, and it's through the treatment and then also the recovery? I'm presuming that you had to be in the hospital, for example, for your CAR T for at least a week, if not longer. Laurie Adami: Yeah, I was diagnosed in 2006 and spent 12 years in continuous treatment, all in Los Angeles where I live. When I did my CAR T, I was also in Los Angeles, so that made it easier for me, as well as my family, because when I went in for CAR T, I was just at the UCLA main hospital, which is about 20 minutes drive from my home. The process for 12 years was difficult at every level, both physically as well as emotionally and mentally. My son was only in kindergarten when I was diagnosed, and I was given horrible statistics up front in terms of my survival likelihood, but I was determined to stay alive, and thankfully for me, I was able to get into CAR T really at the end. And like Navneet said, I would have been going to hospice if the CAR T trial hadn't opened because I had literally burned through six other treatments, none of which worked. Dr. Fumiko Chino: It's truly a transformative treatment, and I can only imagine that for you yourself, the burdens must have been immense. I know that you were an executive flying, it sounds like around the world. How did that change your life? Laurie Adami: So I lost my career as a result of my illness because it was clear after my first relapse, after the only treatment that existed at the time, which was 19 years ago, that this was going to be a battle that wasn't just going to go away. And so, I was really seeking things constantly, and I would do a treatment, it would fail right away. It was really, really difficult at every level. So I had to go out on disability from my work, and then I was never able to go back, because by the time I finally got CAR T, then COVID hit, I couldn't start traveling around the world with my special immune system. Yeah, it was costly at so many levels, but thankfully, thanks to science and all of you doctors on this call for administering these therapies, I am so grateful to be alive. Dr. Fumiko Chino: Well, that segues really nicely in terms of the next advancement of science, which is to take CAR T out of the hospital. Now, Navneet, do you mind giving us an overview of your , outlining key considerations for outpatient administration of CAR T, so discussing things like remote patient monitoring and what is really required in terms of the investments from the cancer center? Dr. Navneet Majhail: Certainly, Fumiko. At the end of the day, as we considered moving these therapies to the outpatient setting, there were two big problems we were trying to solve. One was the capacity issues. I mean, again, we've had increase in the utilization of these therapies, at least across our network, at the rate of like 15 to 20% per year, right? So that's your trajectory where it's heading, and there's a lot more indications coming down the road, and there's no way our health system or any other health system in the US has enough beds on the inpatient side to accommodate this, right? So one was, how do we address the capacity issues that are happening today and that we foresee happening in the future in an innovative way? And the second was, how do we make this therapy more financially sustainable? These are expensive therapies, just by the cost of the product and the care that's given around it. And the more we can do this in the outpatient setting, the less we use inpatient resources, everything that comes with the hospital stay, and would certainly make this more financially sustainable. And I think as we think about moving this to the outpatient side, of course, across our network and for any other place that's considering it, a big component is patient experience and patient safety, right? Because as we discussed early on, there are some potentially really lethal toxicities that are associated with these products. They've gotten better. They are seen less often, and it's not very often that we see those severe toxicities, but they can come up very suddenly. We’ve got to make sure that you've got the pathways and everything else in place to manage those patients in a safe way. So, we have a multi-site network. We currently have 10 centers that are a part of the Sarah Cannon Transplant and Cell Therapy Network. It's physician driven, and what we do is we like to standardize things as much as possible, so all sites can do the same thing, and we can monitor outcomes, data, and what's happening to patients in that context. So, where we ended up with is using a remote patient monitoring platform to essentially care for these patients in the outpatient setting. It's actually a pretty cool technology and a cool thing our teams came up with. I'm talking about this, but to be honest, I cannot take any credit for what our teams have done. At the end of the day, we currently have a contract with an organization called Current Health. So, they have these kits, which include a remote patient monitoring device. It's an FDA cleared device, and it's essentially something that you slip onto your arm. It's a small, round, an inch-wide monitor. And what it does is it sends data on your vitals, your temperature, your pulse ox, your pulse rate, a whole variety of things, through Bluetooth technology to a central command center that's manned by trained nurses. And what we did was we worked with Current Health to essentially come up with the algorithms for what is a true indicator, potentially true indicator for complications like CRS, right? So if you're sleeping at night, guess what? Your pulse rate goes down, right? If you've just come back from a run, you'll be tachycardic, right? So if you're sleeping with three blankets on you, your temperature will go up, right? So how do we come up with these algorithms which take out the noise and really help us focus on what might be potential CRS? And I'll confess, we are always working to refine these algorithms, make them better as we go forward. Once the nurse sitting in that central command center identifies a potentially true alarm, then we work with them to come up with the triage pathways and the clinical pathways for management so that the patient is triaged to the right care at the right time. So if they end up in the ER, what are the pathways for the ER to give tocilizumab very promptly, right, within 60 minutes of showing up there and so forth. So that is what we have developed across our network from an outpatient care platform, and what we've seen in this context is that we still have around two-thirds of our patients who end up getting admitted in the outpatient setting. So we typically start as a start with the lymphodepleting chemo, and we'll keep it going through at least day 14 after the infusion of the CAR T-cells. And during this time period, around two-thirds of our patients will still end up getting admitted because with the slightest fever, we don't want to take a chance. We'll triage them quickly to the ER or the hospital. But then the median length of stay was only four days compared to our historical data where, as you can imagine, we would keep these patients in for a median of 16 days. So that's how we are managing these patients as we go forward. And like I said, we are doing a lot of research to see how can we make things better, how can we manage some very, very early CRS in the outpatient setting, for instance, and how can we keep refining the alarms and so forth? Dr. Fumiko Chino: That sounds amazing, and it sounds like it's truly something that would not have been capable without some more advanced technologies in terms of remote patient monitoring. So we're truly galvanized by our technologies, telemedicine has really revolutionized, at least during COVID. So I'm assuming you're capitalizing on some of those advancements. Dr. Navneet Majhail: We certainly are, and one of the interesting things I'd like to share, and maybe Laurie can comment on this or may validate this, right? So we collect the survey data, and we talk to the patients about their experience. And one interesting thing that came across these conversations was the fact that many patients and their caregivers felt more secure that there was someone potentially watching them 24/7 for these alarming signs. As you can imagine, as these patients come in, we scare them, right? “Hey, this is very, you know, innovative therapy. This might fix your lymphoma or myeloma, but hey, what, I mean, you got this bad CRS, you know, X number of people will die because of CRS and severe ICANS where you may get seizures and whatnot. But yeah, go home and sleep over it, right? So you can go home, you can stay in the outpatient setting, and come back tomorrow to see us, right?” So it was very interesting to us, that theme where patients felt that, okay, they had a level of reassurance that there was someone watching them. And that to me was very interesting as we collected that data together. Dr. Fumiko Chino: Laurie, is that something that you've heard of from other patients, at least treated in the outpatient setting? Laurie Adami: So I have not actually spoken to a patient who's had the monitoring on them. I've spoken to numerous patients who've done it outpatient and have been very scared, and their caregivers have been even more scared, because you know, not all caregivers are created equal. Some of these patient populations are older, and you know, there can be confusion. So, you know, I think the fact that these monitoring devices are going to become available will be immensely helpful, not only for the patient's well-being, but for their caregiver who's right now on the hook. If they fall asleep and miss the patient spiking a fever, I mean, this is the scary stuff. So, I think this is fantastic. I do wonder how you manage, how you figure out the ICANS part of it, because I know the symptoms you're talking about are primarily CRS. So does the monitor do anything that can gauge the mental activity or no? Dr. Navneet Majhail: We are spot on that the monitoring is mostly focused around CRS. Now, for example, our program here in Nashville, the process we've set up is, so the kit that the patients use also has a tablet, through which you can have a video conference capability, right? So the process that we've set up here at the Nashville program where I practice is that one of our nurses will do a video call at 8:00 p.m. And again, I mean, you can imagine, I emphasize the team effort because you've got the outpatient clinic team, they'll have patients, as you know, there's a whole assessment that patients do, where they write their name, you know, a sentence and, you know, everything else. And at the end of the day, all that is basically passed on to the nurse who's on at night to do those assessments for patients. And around 8:00 p.m. or so, she'll or he'll connect with the patient through that video conference capability. They'll have them write that sentence and then show it on that video to see what it looks like. And then he or she can compare as to what it was 12 hours earlier at 8:00 in the morning. So it is not around the clock ICANS monitoring, but at least patients don't go 24 hours or more before getting that assessed. Dr. Fumiko Chino: No, that's so helpful to kind of have that clarity. And I love what Laurie said that patients and patient caregivers actually kind of want this, the idea that there's more eyes on them and they're getting this sort of continuous monitoring. So, it sort of meets the brief in terms of optimizing time at home, but also reassurance for patients and caregivers. Dr. Fumiko Chino: Now, Laurie, I had watched your interview on , and you had said something I thought was quite striking. You had gone to four different large cancer centers for various treatments, that ultimately led to your cure with CAR T. Do you mind speaking about how access to specialty care can be really a barrier for patients? I know that you had said previously that you felt lucky to live in LA. And I'm assuming that's not just for the nice weather. Laurie Adami: No, it's not. I'm from the Northeast, and I'm still a Northeasterner, but being in LA where I could get to so many care centers so easily within an hour was a real bonus for me. The other thing that I was lucky to have was good insurance. So I had PPO insurance when I was employed, and that allowed me to see specialists. And I talked to many, many patients now, you know, probably over 50% of patients get diagnosed in community oncology settings and/or community hospitals, and oftentimes those settings don't have specialists. So I speak to patients being treated at Kaiser where they don't even have a lymphoma specialist. And so they're not being given necessarily the best information about the available treatments, and they may never even hear of CAR T. So, it's a real problem for a lot of patients to get to specialists, and unless you're seeing a specialist, you're unlikely to hear about these newer modalities of treatment, immunotherapies, small molecule drugs, CAR Ts, much less likely if you're seeing a general oncologist. They're not going to know about it. And what do they know about chemotherapy, auto stem cell transplant, and allo stem cell transplant, which is being done for over 50 years? And so I'm still speaking to many patients who can't get CAR T because their insurance either won't pay for it, or they live in a state where there are no CAR T centers, which believe it or not is still the case in the United States today. There's still a small number of states where you have to travel two or three states to get to a CAR T center, and you have to get a referral from your community oncologist, and there's no easy mechanism for that happening back and forth. And I'm working on a couple initiatives with some focus groups to make that better, but it's a real struggle. And that's why I was lucky. I had good insurance, I lived in LA, I was treated at four big cancer centers, and within an hour, I could fly to San Francisco or San Diego to see more specialists. So it's really a function of when you're diagnosed, what is your insurance? What assets do you have? What benefits do you have? I speak to patients who if they don't go to work today, they don't get a paycheck. They can't miss a day to travel eight hours to go see a specialist. So there's a real problem with access in the United States and a real problem, I think, with bifurcated health care. Dr. Fumiko Chino: I love that you have used the privilege that you did have, even in the context of a stage four diagnosis, and then...
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A Podcast About Podcasts: Podcasts as Educational Tools for Providers (and Patients)
10/21/2025
A Podcast About Podcasts: Podcasts as Educational Tools for Providers (and Patients)
Dr. Chino welcomes Dr. Vivek Patel and Dr. Eleonora Teplinsky to discuss a recent article in JCO OP that reported a podcast-based curriculum could improve knowledge and comfort with common education topics for oncology fellows. TRANSCRIPT Dr. Fumiko Chino: Hello, and welcome to Put Into Practice, the podcast for JCO Oncology Practice. I am Dr. Fumiko Chino, an assistant professor in Radiation Oncology at MD Anderson Cancer Center with a research focus on access, affordability, and equity. There are over 450 million podcasts available today, and online audio consumption continues to rise year after year. In the US alone, over 200 million people have listened to online audio in the last month, and health and fitness remains one of the most popular categories. Podcast audiences range from the lay public to patients with cancer to providers, with the dual goal to both entertain and inform. A recent randomized control trial published in JCO OP reported that a podcast-based curriculum could improve knowledge and comfort with common education topics for oncology fellows. I am happy to welcome two guests today to discuss the role of podcasts to improve information sharing. They are both podcast hosts, making this ASCO’s first podcast about podcasts. Dr. Vivek Patel, MD, is an assistant professor and APD at Vanderbilt University with a treatment focus on blood cancers. He co-founded the podcast in 2021 to fill a perceived gap in high quality, free, online medical education content in Hem-Onc. The podcast provides the fundamentals, core concepts, and important management approaches in an easily accessible, asynchronous learning platform. He is the first author of the JCO OP manuscript, “,” which was simultaneously published with his oral presentation at the 2025 ASCO Annual Meeting. Dr. Eleonora Teplinsky, MD, FASCO, is the Head of Breast and Gynecological Medical Oncology at Valley Health System and a clinical assistant professor at Mount Sinai. She is the host of the , founded in 2018 with the goal to promote support, inspiration, knowledge, and hope to listeners via patient and provider interviews. She is also active on social media, providing real time expert commentary on active new stories from emerging research to celebrity diagnosis and treatment. Our full disclosures are available in the transcript of this episode, and we have already agreed to go by our first names for the episode today. Vivek and Eleonora, it’s so wonderful to speak to you. Dr. Eleonora Teplinsky: Thanks for having us. Dr. Vivek Patel: Glad to be here. Dr. Fumiko Chino: Our specific topic today is podcasts as an avenue for knowledge transfer for both patients and providers. This conversation is loosely based on a manuscript that Vivek and team published on the findings of a randomized control trial of an education intervention. Vivek, do you mind sharing with us how you got interested in podcasting and then briefly discussing what your study team did and the findings? Dr. Vivek Patel: Yeah, yeah. So getting interested in podcasting really started when I finished residency and was starting Hem-Onc fellowship. There is a popular podcast, The Curbsiders, and I always listened to it when I was a resident to learn core concepts in internal medicine. When I got to Hem-Onc fellowship, there was a gap. And after my first year of fellowship, I met with a couple of my co-fellows and we just decided, “Hey, let’s just make a podcast. Maybe it will just be for our program.” It ended up being this bigger thing that we created with The Fellow on Call. So that that is really what the start of the journey was, was just, "Hey, there is nothing here. Let us just do something for fun," and then it just kind of took off from there. For the study that we did though, what we really focused on was, there’s been so many studies out there now that have looked at using podcasts and that people like them, people enjoy them, that they are convenient. But there are very few studies looking at, does podcast actually improve knowledge? And that is a very difficult thing to study. You know, it is really hard to do education research in general, particularly in the multi-center setting. What we did was we designed a multi-center cluster randomized trial where we included 27 hematology-oncology fellowship programs and we randomized the programs to a supplementary curriculum in addition to the standard didactics with our podcast and another podcast that we work closely with, The Two Onc Docs, versus just standard curriculum alone, with a goal of understanding does fellow comfort level in a select set of topics improve and does their knowledge assessment in those topics improve as well? So we actually created and validated a knowledge test as well. We decided not to use the in-training exams because, you know, we figured, well look, these in-training exams cover a broad range of topics. We are really focused on our very key principles in a few disease areas. And the bottom line results were, it was a positive study. We found that the knowledge test scores improved by 15.5% favoring the podcast arms and fellows at the end of the year felt more comfortable in the disease topics that we had given them. So it was interesting to see that the podcast actually improved both comfort and knowledge in the set of topics that we had chosen. Dr. Fumiko Chino: I love this type of pragmatic, cluster randomized trial which asks a really discreet but also important question, which is how can we be improving education? And also, I think making it more accessible, right? And that is one thing I think your podcast does amazingly, is that you really go into depth on these topics which are quite complex, and I think is useful not just for trainees, but also even practicing physicians that kind of want to bone up on these topics. Now, The Fellow on Call podcast is a provider-facing podcast. It really focuses on education for trainees and the practicing provider. Interlude is a patient-facing podcast with a goal of sharing stories and knowledge about cancer survivors and caregivers. Eleonora, I would love your perspective on the role of podcasts in the cancer community and how your podcast differs in focus and framing from an educational podcast for trainees. And also, honestly, just given your role as a program director of a new fellowship program, I would love your thoughts about the findings from the study itself. Dr. Eleonora Teplinsky: I love podcasts, first of all. I think they are amazing for learning, especially asynchronous learning, and we know everyone learns in different ways, right? So having more opportunities is so important. But I think it is really important to do studies like this and to highlight that yes, in fact, podcasts do help. And I do think it should be part of at least the offerings of how do we provide information and materials to our trainees. And I agree, it is not just trainees, right? Your maybe board preparation, something you can plug in in the car while you are driving. I think so many uses. From my side, I think that podcasts also have a really good role on the patient-facing side. And so I will very briefly, I started actually first just educating on social media. This was right around the time where misinformation was starting to become rampant, and patients were coming in with questions. And you know, I felt like as I am sure we all do that 15 minutes is not enough time to spend with the patient and they were leaving sometimes with more questions than they came in with. And so I started saying, “You know what, let me just put this stuff out there online, no medical advice, but just educating.” And then I realized, wait a second, I don’t really understand survivorship that well. I do not understand what our patients are truly living with because we were not taught that as trainees. Things have changed a lot, but back then it really was not a focus. And so I realized I just wanted to talk to patients, not my patients, people who I did not have a doctor-patient relationship with, just to hear their stories. And, oh my gosh, you know, the first one I did, I remember I said, “Wow.” There was so much that I did not know about that experience. And so it’s really helped me as well. But I think putting it out there for patients who do not always feel comfortable asking questions online, going to a support group and speaking up, this allows them to, again, in an asynchronous way, to hear people's experiences and stories. And then over time I started bringing on experts. You know, Fumiko, you were on, and we talked about financial toxicity and radiation. These are questions that patients have, and it allows them to get information from a trusted source. And I will say, I think it really helps people when they have time, when they are not in a high pressure environment. On their own time, they can write things down. They really can process the information, and I think in a less stressful way, empowering themselves to then go to their doctor's appointments and say, “Hey, can we talk about these things? Right? Can we talk about ways to protect my heart during radiation?” All of these questions that maybe they did not even know they should be asking. Dr. Fumiko Chino: I love that when you said you thought you were going to create this podcast as an education tool for patients, but that you learned so much about it. And I have to say, I have learned a lot from patient's stories and that really large engaged survivorship population. And having some of these conversations has been really invaluable to my ongoing education role. Hopefully all lifelong learners here, both on this call, but also our listeners. The rise of podcasts aligns with how communication and education has changed in the modern era from in-person didactics to conversations on Zoom, social media, TikTok. Some of this has coincided with the 2020 podcasting boom during the pandemic lockdown, and some of it is really driven by younger patients and younger providers. They seem to learn better with the rise of alternative media formats that can better engage Gen Y, Gen Z. So for example, over half of the fellows on this trial already used podcasts as part of their baseline educational resources and only a quarter used textbooks. Vivek, I would appreciate your take as a junior faculty member on how your education may have changed over the course of your training and how this continues to evolve based on what you have seen in the next generation of medical trainees. Dr. Vivek Patel: When I was a medical student, a lot of the resources I used were textbooks, some of the traditional resources, and as I advanced on to training and went into residency, it became challenging to keep on reading textbooks and going through all of that. Podcasts are a convenient way to get that information, and I think as the younger generations are coming up, they are really interested in these short form videos and things like that. So it is really convenient. The other nice thing about these podcasts, most medical podcasts will cite their resources, they will have credible experts come onto their show as guests, and it just provides that foundation that you are really hearing from the expert, hearing a different opinion. If you are at a certain training program or practicing in a certain setting that maybe things are done a little bit differently somewhere else, you get to hear different perspectives on this stuff. So I think it is a really convenient and interesting way to disseminate information. And as you listen to medical podcasts, and as medical podcasts grow, there are certain niches that can be filled within the community and different people will kind of choose which pieces of information they need from each various podcast platform and episode that you listen to. Dr. Fumiko Chino: I have really appreciated how we have kind of democratized information. You know, it is Wikipedia, UpToDate, open access articles. You know, it is actually becoming far more accessible to so many more people, not even just people who have to buy the $250 textbook. I love this as a person who never particularly liked reading textbooks. Dr. Vivek Patel: One thing to kind of go off of that that people think about is social media, right? When you think about disseminating information on social media, it can often be very polarizing. The beauty about podcasts is that you have the ability to explain your thoughts. You are not just making an inflammatory statement that is going to get a bunch of likes. You can really elucidate what you are thinking about. When we think about some of the inflammatory comments that are made about some cancer trials, for example, in the podcast that we have, if you check out The Fellow on Call, we really break down very complicated information, go through every trial, the history of of every trial that has been done in the space, and we will be very critical, but we will be very critical in a very just reasonable way saying, “Here are the limitations.” And the ability to be able to explain further in the podcast setting, I think really helps. Dr. Eleonora Teplinsky: In the manuscript, you talked a lot about the show notes, and I thought that was such a good point, right? It is not just the podcast, it is also what people are taking away in terms of the references and the show notes in there. Dr. Vivek Patel: That is one of the biggest things that we actually sought to figure out. There has been no study looking at show notes for podcasts and one of the things that you are doing when you are making a podcast episode, you do a lot of research that goes into that for some of these medical podcasts. We made sure to basically show our work, right, and to have all of the links to all of the trials in there. It was a way that we could actually, in the trial, the fellows that were randomized to the podcast arm were really force-fed these links to these show notes. What we saw with our website numbers, we were able to track these things, is that the numbers grew, that we saw more people were using it and continued to come back. So it is just an interesting thing. There is a way that a podcast can have audio components and visual components with show notes and accompanying materials. Dr. Fumiko Chino: We are tasking trainees to know more and more, right, more and more things in depth, more clinical trials. I always say they cannot eat the whole chicken, they just want the McNuggets. You have managed to make the McNuggets in a palatable format and kind of serve them up so they are easier to absorb, consume, et cetera. Now I have a slight shift to a more patient-focused question for you, Eleonora. You know, I know that you have witnessed a generational shift in sort of knowledge and communication in patient communities. Personally, I have seen that older patients may be more likely to entirely rely on my recommendation and may feel less comfortable with true shared decision making, whereas younger patients often, quote unquote, "do their own research." They come sometimes with very concrete requests or demands for their treatments. And I would love to see kind of how you have seen it evolve in your clinic, in your online advocacy, and those conversations. Dr. Eleonora Teplinsky: It is a different time. I love that patients are doing research and that they are advocating for themselves, and it really is that model of shared decision making. But I think some of the challenges that we are facing now is that there are a lot of voices online that are not providing evidence based information. And this is where social media can be challenging because there is no verification of health care credentials. Anyone can call themselves an expert, and we know these algorithms prioritize posts that have likes and engagement even if they are not promoting accurate information based on research and guidelines. That noise is there. It is hard to drown it out. And so kind of what I think, and I feel strongly that more doctors and health care professionals should be online, we can do our part in promoting the evidence-based information. You know, I am not going to compete with someone who is promoting disinformation, but I think the more we can share credible, evidence information, at least I feel like we are doing our part to empower our patients to listen and to then take those questions to their health care professional. And I think in a podcast setting, you are right, you can break down the inflammatory posts and the headlines and really dive into it. By having patients share their stories, I think that is really important. Having experts share their experiences, I think that just all goes toward that education and that promoting of accurate information because misinformation is here. And misinformation, you know, partly is always steeped in a little bit of truth in a way, and some people who are saying they believe it. And so I think it is our responsibility to say, “Here are the trials, here are the studies, here is the data.” And then patients are empowered to make their own decision. But you are right, people are coming in and a lot of what they are asking for comes from wanting to take charge of their own health, which I very much respect. But I think the more we can promote the more accurate information, it helps us all. It helps us as a cancer community to provide the best possible care, which is all we are trying to do every day. Dr. Fumiko Chino: Absolutely. I know that, you know, I have kind of shifted with this idea of like, I want to make sure I am aligned with my patients, even if I do not necessarily agree with what they are asking for or whatever, ivermectin or whatever non-evidence-based treatment for their cancer. You mentioned the spread of misinformation. I know that there was a good trial that Dr. Skyler Johnson did that showed that actually harmful misinformation was more likely to be shared than actual evidence-based medicine, which kind of aligns with that whole idea of the clicks, the increased engagement. Now, it is often quoted that about 90% of podcasts don’t make it past their third episode. You are both busy clinicians, researchers. Producing a podcast is one extra thing that you do in a time when we are all multitasking like crazy. We are increasingly buried in the rising demands of unpaid labor from committee work to peer review. I know I am on a committee with you, Eleonora. So I know that we are both putting in time for that. What are the benefits for you both of hosting podcasts? How long do you think you can continue on this role? How do you ensure that your content is really meeting the needs of the intended audience? I would love to hear from both of you, but Vivek, go ahead and answer first. Dr. Vivek Patel: Yeah, so definitely different podcast focus. So from my perspective, you know, one of the reasons why I stayed in academic medicine was to educate. It was really, I love teaching and it is something that was really important to me is helping the next generation of doctors learn, nurse practitioners, PAs, nurses, you know, pharmacists, just everybody. I really just love the idea of medical education and also learning from our other colleagues as well, our other pharmacists and the multidisciplinary team that we have. And the thing that keeps me going with this podcast is that it is a way that I can teach people on an international scale. We never thought that was going to be possible when we started out this thing that we are like, "I do not know, let us just release this to our fellowship." And then it grew into this thing where we have international listeners and you know, we are in over 80 countries and it has been just really lucky for us to have gotten to be able to do this. So what keeps me going is just hearing from...
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Advance Care Planning: How Can We Improve Access and Uptake?
10/20/2025
Advance Care Planning: How Can We Improve Access and Uptake?
Dr. Chino welcomes Dr. Yael Schenker to discuss a new clinical trial testing the best way of engaging patients with Advance Care Planning (ACP), the process of understanding personal values, life goals, and medical care preferences so that patient wishes are honored at end-of-life. TRANSCRIPT Dr. Fumiko Chino: Hello, and welcome to Put Into Practice, the podcast for the JCO Oncology Practice. I am Dr. Fumiko Chino, an Associate Professor in Radiation Oncology at MD Anderson Cancer Center with a research focus on access, affordability, and equity. Care delivery goals for the critically ill, including those with cancer, have shifted towards a patient-centered framework. Advance care planning (ACP) is the process of understanding and sharing personal values, life goals, and medical care preferences so that patient wishes are honored at the end of life. Despite growing evidence of the benefits of these discussions, documentation of advance directives remains low, with some studies showing less than half of people with advanced cancer have a living will or health care power of attorney. I am happy to welcome a guest today to discuss a new clinical trial evaluating the best way of engaging patients with advance care planning. Dr. Yael Schenker, MD, MAS, FAAHPM, is a Professor of Medicine with tenure and the Director of the Palliative Research Center at the University of Pittsburgh and the UPMC Hillman Cancer Center. She is also a practicing Palliative Medicine Physician at UPMC. Her research focuses on improving quality of life in serious illness with a particular focus on palliative care delivery models. She is the first author of the JCO OP manuscript, "," which was published earlier this year. Our full disclosures are available in the transcript of this episode, and we have already agreed to go by our first names for the podcast. Yael, it's wonderful to speak to you today. Dr. Yael Schenker: Thank you so much for having me, Fumiko. I am such an admirer of you and your work. It's really an honor to be here. Dr. Fumiko Chino: I am excited for our discussion. Do you mind starting us off with just a little history about how you got interested in palliative care and what the field looked like when you were in training and your early career? For example, the term "death panels" from 2009 still really haunts many of us interested in advance care planning. Dr. Yael Schenker: Yes, that is actually when I started in the field, and I remember those days well. I had a windy path to medicine, and by the time I got to medical school, I was really drawn to taking care of the sickest, most complicated patients. I loved all of the life stuff, the stuff that was not on the diagnosis list but had such an impact on how people navigated a serious illness and what was important to them. I remember going to a funeral in the Western Addition in San Francisco for one of my first primary care patients when I was a resident and just being blown away by this incredible community, this church filled with people, this vibrant life that I had only caught tiny glimpses of in our 15 minute clinic appointments. I caught the research bug during residency, and I started really thinking about how we were communicating with patients and how we figured out what was important to them. At that time, I was headed towards a career as a primary care doc, but I stayed at UCSF to do a general medicine research fellowship, and I wrote my first grant about serious illness communication to the National Palliative Care Research Center. I got that grant, and I figured if I was going to be a palliative care researcher, I should really be a palliative care physician also. Amazingly, back then, and this was 2010, you could grandfather in and take the palliative care boards without doing a palliative care fellowship. So I did that. I started practicing palliative care clinically, and I really dove into this question of how do we make sure that people have a voice in the care they are receiving near the end of life? And how do we make sure that care aligns with what matters most to them? Those questions have more than filled 15 years as a faculty member at the University of Pittsburgh, and it has been such a joy to watch the field take off and, in the last five years, to lead a research center focused on improving the quality of serious illness care. Dr. Fumiko Chino: That's a great history. I wanted to ask just a quick follow up question on that. How were we doing this before? Because I know you have spent the last 15 years of your career improving how we do advance care planning conversations and trying to figure out the evidence-based solutions for making change. But how were we doing it before? Dr. Yael Schenker: Yeah, so advance care planning has an interesting history, dating back to the 1990s and the Patient Self-Determination Act and the sort of requirement that we let people know that they have a right to make decisions about their care. And I think for a long time, we sort of thought of advance care planning as a form, and we would hand people a form and sort of check a box and say that we were done. I think we have done so much since that initial history to really understand what it means to involve people and to give people a voice in their care and to view advance care planning as a process, not a check box. Dr. Fumiko Chino: That is so helpful, again, to practice truly patient-centered care. Now, this trial, the "Patient-Centered and Efficacious Advance Care Planning in Cancer," or PEACe, compares the effects of facilitated advance care planning with a trained nurse versus a patient-directed program delivered via a website and written materials. Do you mind giving us an overview of this randomized study and what you found? Dr. Yael Schenker: Absolutely. And just to note that advance care planning continues to be a source of some confusion, both for clinicians and for the public. So, like we said, advance care planning is defined as the process that supports people to understand and share their personal values, life goals, and preferences for future medical care. And it is now widely recognized as a strategy that improves the patient-centeredness of care. And failure to deliver patient-centered care near the end of life, meaning care that people want, remains a key shortcoming of our cancer care delivery system. So advance care planning is guideline-recommended for patients with advanced cancer, but there are a lot of different ways to do advance care planning. And these approaches vary quite a bit in terms of cost, complexity, who is involved. So the question that really motivated this study was, which way is best? And like you said, we compared two different ways to do advance care planning: patient-directed advance care planning, in which we gave patients written and web-based tools to complete the steps of advance care planning on their own time, at their own pace, and a more resource intensive approach, facilitated advance care planning, in which patients had structured advance care planning conversations with a trained facilitator. This was a single blind, patient level, randomized comparative effectiveness trial. We enrolled 400 patients with advanced cancer. Our primary outcome was engagement in advance care planning, which we measured using a validated scale called the ACP Engagement Survey. And I will note that we chose this as our primary outcome because it measures a lot of different advance care planning behaviors, reflecting this updated definition of advance care planning as a complex process rather than just completing a form. And so this scale includes subscales related to self-efficacy or confidence and readiness to do things like choose a decision-maker, talk with your decision-maker about what is important, sign official papers, and talk with your doctor. And so what did we find? At 12 weeks, patients in the facilitated advance care planning group had higher engagement, and this was a difference that was both statistically and clinically significant in terms of behavior change. They were also more likely to have completed a living will or advance directive at 12 weeks, and this was also a significant difference. 75% of participants in the facilitated group had completed a living will or advance directive at 12 weeks versus 61% in the patient-directed group. And another way to say that is that at 12 weeks, the odds of having a living will or advance directive for patients in the facilitated group were over two times the odds of having a living will or advance directive for patients in the patient-directed group. There were no significant differences between groups in the odds of having an advance care planning conversation with family or friends or with physicians. And, notably, all advance care planning behaviors did increase from baseline in both groups. Dr. Fumiko Chino: I really love the trial, which is a randomized trial, obviously our highest level of evidence, but also it is a pretty-straightforward trial, which is, if you do not need to use the more resource intensive modality, which is the trained nurse facilitators, if just giving people some information is going to work, then show that. But sadly, no, it really- having a trained facilitator really does seem to increase uptake. So one point that was made in the intro of the study, and I think you just made, which is the field of ACP has moved beyond the sole goal of legalistic forms to encompass several different patient-facing approaches. So again, like what you said, it is beyond just checking a box. The goal of identifying the optimal strategies for facilitating patients to have these important discussions with their families and providers is so important. As you said, there was no difference in the trial groups between discussing with friends and family with their physicians, but there were far higher rates, almost 90%, of having those end of life wishes discussed with families. But actually less than half had this type of discussion with their physicians. So why do you think that is? Dr. Yael Schenker: Yeah, that is a really important observation. Thank you for bringing it up. It is something we have thought a lot about. And first, I want to say that discussions with family are important in and of themselves. We know that a lot of the work of advance care planning happens at home, outside the medical setting. And we know how important and valuable those discussions with family can be. Earlier in my career, I led some qualitative work interviewing family members who were in the midst of making decisions for a loved one in the ICU. And in those moments, which often involve significant emotional distress or conflict, we heard again and again about the value of being able to think back on those conversations with family and understand what was most important to their loved one. So conversations with family and friends are important. The second thing I would say is that, yes, conversations with physicians remained relatively infrequent at 12 weeks. Just under 50% reported an ACP conversation with their physician in the facilitated group versus 40% in the patient-directed group. And this is, in some ways, not surprising given that neither intervention included a physician-directed component. So we were not asking oncologists to do anything as part of this study. And I will say, with the caveat being that I am not an oncologist, but there are lots of barriers to having these conversations. The simplest being practical barriers like not having enough time within a standard oncology clinic visit. We also know that many physicians worry that advance care planning conversations will take away a patient's hope. And that is something our research group has also looked at. We actually did not find an association between advance care planning conversations and decreased patient hopes. If anything, these conversations seem to increase patient hopes, but that worry remains. And so I think we have more work to do figuring out how to integrate advance care planning with clinical care. And of course, the holy grail of advance care planning is how do we improve goal concordant care at the end of life? And that is something we are still working on. Dr. Fumiko Chino: What you said, that the physician logistical barriers, but that also sometimes physicians, us as oncologists, that we have this fear that is actually not founded in reality that somehow we are kind of stripping hope, whereas I agree, I have actually read multiple research output that say these conversations are necessary and they do not squelch the doctor-patient relationship, and they actually help patients actually prepare better for the future. Now, there were two recent JCO OP articles focused on palliative care and advance care planning. A quality improvement project found that a proactive did not appear to increase palliative care referrals or ACP documentation in a community out-based clinic. And then a different study, compared end of life care for Medicare Advantage versus traditional Medicare, and it found that participants on MA plans were less likely to have an ACP claim despite having generally less intense health care utilization at the end of life. I think both of these studies point to a sort of a larger, more complex environment around optimal end of life care, including the diverse barriers from things like limitations of the provider workload and to health insurance. Do you have a gestalt about how to address these types of system barriers in improving ACP in cancer? Is it a funding problem? Do you think it is a staffing problem? Is it a communication problem, an education problem? Is it all of the above? Dr. Yael Schenker: I would say yes, and- I think, first, it is so important to have work like the QI project you mentioned looking at these barriers in real clinical contexts, as well as work like the claims analysis you mentioned including patients with different insurance types. The real world is a very complicated place, and what works in a tightly controlled research environment may look very different when you broaden the patient population or when you do not have the same support for the interventionist's time, for example. I think social workers are a great example of this. It is very hard to protect social work time for palliative care interventions. Their time is worth its weight in gold. They are not available in many settings. Historically, they are non-billing providers. So I think in order to address system barriers, we really need to look at system resources and drill down on implementation challenges. What is available? What are the barriers? Where are the disconnects? Before we sort of throw money or staff at a problem, I think we have to understand the context. And that is where implementation science is so helpful. We have this evidence-based thing that we are not doing. Why not? This is something our team is starting to work on, and I think we are seeing some interesting system-level approaches to facilitate advance care planning being tried at different cancer centers around the country. So that is exciting. You asked for my gestalt, which is that we need both top down and bottom up strategies. I think top down, system level strategies make advance care planning easier and the default for clinicians. Bottom up strategies give patients and families the tools they need to feel more comfortable having these conversations. So the next step for our team is to identify and prioritize these strategies, and I am very lucky to have some amazing implementation science colleagues to help think through this work. Dr. Fumiko Chino: In the discussion of your study, you bring up the idea of a stepped care approach to ACP, i.e., doing a less resource intense option first and then advancing to a higher intensity treatment as necessary. And this model was presented at last year's ASCO, . Dr. Temel and her team showed that a stepped palliative care plan led to fewer palliative care visits without diminishing the benefits for patient quality of life. And this method struck me as really feasible for ACP given how your study finds that even though less than half of those in the patient-directed group actually visited the website, those that did spent almost an hour on it. So the ones that actually engaged in the patient-directed, it seemed like they actually used the tool. So I would love your take on that. Dr. Yael Schenker: Yes, I absolutely agree, and the study you referenced by Jennifer Temel, Joe Greer, and colleagues is an excellent example of a stepped care model that used fewer resources but was non-inferior to a more traditional resource intensive approach. I love that study because I think we have to be thinking about palliative care as a limited resource, and resources for advance care planning are no different. For some patients and families, the opportunity to engage with a high-quality resource like the written and web-based materials from Prepare for Your Care, which is what we used in the patient-directed arm, is an amazing and highly successful approach to advance care planning. For others, there are just too many barriers to engagement, and the fact that only 43% of participants viewed the website when left to do so on their own in their own homes is telling. I think a facilitator can help overcome those barriers, and we heard a lot about the value of those relationships and the emotional support the facilitator provided. That may be very helpful for a subset of patients. So I think it is always challenging to individualize care, but we are seeing personalized medicine in so many contexts, and I am really excited to see more individualized, strategic, personalized approaches to advance care planning. Dr. Fumiko Chino: I like the idea that personalized medicine continues through end of life discussions, which is that the approach you use for one person may not work for someone else. And this is what is difficult about all of medicine, right, is that it is not one size fits all, and we really need to be tailoring our approaches and our methods to the patient and the family in front of us. We have really incredible but also expensive new anticancer treatments that are coming on the market, it sounds like every week at this point. And I think the balance is sometimes very challenging to find for our more complex patients with advanced cancer. Dr. Yael Schenker: It is getting more and more interesting. I think the field of palliative care, the need for palliative care is only growing as people are living longer and longer with advanced cancer or many other kinds of serious illness. So when experts have looked at kind of what is in the syringe of palliative care, it is really about giving people the skills to cope with the uncertainty, the worries of serious illness, helping people to live well. Symptom management is a key part of what we do, but it is also about walking alongside people as prognostic awareness deepens, as priorities shift, being attuned to what people need and what matters most. So it is an absolute privilege to do this work in partnership with oncologists and amidst this rapid proliferation of treatment options you mentioned. One of the things I really love about palliative care is that it is constantly evolving, and I am constantly learning. Dr. Fumiko Chino: It strikes me that there are so many things that we can do to improve quality and sometimes quantity of life that are beyond just a medication. You know, we just had the CHALLENGE trial which showed that exercise can prolong quantity of life. I know the groundbreaking study with people with lung cancer that palliative care, it seems to extend quantity of life. And so this kind of dual goal of trying to do everything that we can to truly practice patient-centered care is just an...
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2025 ASCO Quality: Creating a Statewide Cancer Drug Repository Network to Improve Access and Affordability
10/11/2025
2025 ASCO Quality: Creating a Statewide Cancer Drug Repository Network to Improve Access and Affordability
Dr. Chino welcomes Dr. Emily Mackler, PharmD, BCOP, the Co-founder and Chief Medical Officer of the YesRx program and an Adjunct Clinical Associate Professor at the University of Michigan. The YesRx program has saved patients in Michigan more than 17 million dollars in the past 2 years. Dr. Mackler's article, "," presented at the ASCO Quality Care Symposium. TRANSCRIPT Dr. Fumiko Chino: Hello and welcome to Put into Practice, the podcast for the JCO Oncology Practice. I'm Dr. Fumiko Chino, an Associate Professor in Radiation Oncology at MD Anderson Cancer Center with a research focus on access, affordability, and equity. Our listeners know that financial toxicity is a growing issue which limits access to high quality cancer care. Cancer drug repository programs offer a unique solution to the affordability crisis, connecting patients to free medications while reducing medical waste. Cancer drug repositories collect unused, unexpired, manufacturer sealed cancer medications and redistribute them to those in need. I'm happy to welcome a guest today to discuss the YesRx program that has saved patients in Michigan over 17 million dollars in the past 2 years. Dr. Emily Mackler, PharmD, BCOP, is the Co-founder and Chief Medical Officer of the YesRx and an Adjunct Clinical Associate Professor at the University of Michigan. Go Blue! She has led the development and implementation of quality improvement programs across the state of Michigan to improve the care of patients with cancer. She is the first author of the JCOP manuscript "," which was simultaneously published with her oral presentation at the . Our full disclosures are available in the transcript of this episode, and we have already agreed to go by our first names for the podcast today. Emily, it's wonderful to speak to you. Dr. Emily Mackler: Thank you. It's an honor to be here, and I appreciate the "Go Blue." Dr. Fumiko Chino: I spent some time in Ann Arbor and have some great love of Michigan. So, and the Mitten State in general. Dr. Emily Mackler: Wonderful. Dr. Fumiko Chino: Absolutely. I'm a Midwesterner at heart, so there's deep love. I love the program. I think it just makes sense. Do you mind outlining for me just how the program started, what you found in the last two years helping lead it? Dr. Emily Mackler: I actually love our initiation story to this program in that our legislation in Michigan took effect actually in 2006, and our program, the first repository went live in 2021 in a small community practice in Michigan where the community oncologist came into the pharmacist's office, put a bottle of medication on her desk and said, "This is a Honda Civic. Can you do something with it?" That was really our impetus or kind of the starting point. We started the network in 2023 because the first three sites in the state that developed their own internal cancer drug repository programs were done as most things are because a need was identified and there was passion about providing this care and resource to patients. And it became more and more evident that the sustainability for those sites was becoming challenged as there was growth. And I think the most important component that brought us together as a network was that not every practice had the resources to house their own repository, therefore further limiting access to those who probably already had it limited. Dr. Fumiko Chino: I got you. Do you mind just running through some numbers? Because I know, for example, you've had really incredible growth over the last 2 years, starting at 9 participating sites, going to over 100 now, and I know you've helped over 1000 people in Michigan. Dr. Emily Mackler: We did start with 9 sites, and those were part of three practices across the state. We are now at over 105 sites across Michigan, including tribal health clinics, small community practices. We cover 90% of the counties in the state as far as those counties having leveraged resources to donate medications or having have received medications from the repository. We have received over 28 million dollars worth of eligible cancer medication within the repository and have been able to get out over 18 million dollars to Michigan residents. So over 1500 Michigan residents have received medication at no cost from the cancer drug repository. Dr. Fumiko Chino: And I know that as part of this manuscript, there were some surveys for the providers who had participated in the network, and it sounds like they were really just overwhelmingly positive. They thought it was easy to participate, they felt like it helped their patients. So just an incredible service. Dr. Emily Mackler: And I think from that component with the survey, the approach we've taken is a little bit different than perhaps other large drug repository programs in that our goal was really to serve the clinician in the practice, be the physician, the pharmacist helping with access, the nurse. There are many systems in place that cause some fragmentation of care in oncology practice, and they seem to continue. And we really wanted this to be a very easy, quick resource for clinics that filled gaps for them. And so our response rate to the clinic where, if we have a request come in for a medication, we get that back in the hands of the clinic within 1 to 2 days, and they can provide it to their patient at no cost. We really try to make it as easy as possible for them, no paperwork required for them to fill out related to patient need. We just need the patient to say that they do have need or the patient's advocate, be the financial counselor or navigator in the clinic or someone else. So satisfaction for us was really key to measure and make sure we were following through on what our ultimate goal was, which was really to, again, keep that agency in the clinic, have the information at the ready for the clinicians to not delay treatment any further. Dr. Fumiko Chino: You mentioned something that led into my next question, which is that we know that sort of, in general, the drug repository programs require medications to be unexpired, in manufacturer sealed packaging, they must be inspected by a pharmacist, and they must be received by patients in financial need. And so my next question was just going to be about, you know, the quality control aspects of it, what type of medications aren't accepted, and then the specific qualifications that patients must meet to kind of demonstrate need. It sounds like at least from that respect, you're really relying on the treating physician and their team to say, "Hey, this person has need," and you don't require additional documentation, which obviously makes it much easier for the clinician. But for some of those other aspects, you know, in terms of what are you accepting, what can you not accept, and what do you do with the things that people send in anyway? Dr. Emily Mackler: We really follow the legislation within Michigan, which we are so grateful because it was so forward thinking at the time it was approved. We can accept any medications again that are sealed in manufacturer packaging, except for controlled products, so controlled substances are not acceptable. We cannot accept manufacturer enrollment program medications, so things like lenalidomide that require REMS programming are not allowed to be accepted in the repository at this time. And we do need to ensure that the medications are stored at room temperature for us to accept them. Other than that, it's quite open, and the legislation allows us to collect any medications used for the treatment of cancer or to support the cancer patient. So, in addition to cancer medications, we've also collected and been able to distribute to patients antiemetics, DOACs for instance, or other medications may be used to help support the patient during their cancer treatment. So really somewhat broad. As far as eligibility, our mission is to prioritize patients who are the most vulnerable or in need of therapy. We have not had to develop a tiered system as of yet because we've really been able to keep the inventory to a place where at any point that it's been requested, we've been able to fill the need. There are some scenarios where maybe those medications are difficult to come by, but really nothing where we've had to tier availability. As far as what we do with medications that are not eligible, if they've come to us and they've been inspected and don't meet our criteria for safety, we have a partnership with a research lab at the University of Michigan called the Sexton Lab, and they study currently approved, FDA approved medications for other indications. That lab looks at those medications to see what else they might be useful for, uses some AI technology, and they actually accept the majority of the medications that we're not able to use for that research purpose. Dr. Fumiko Chino: That's fantastic. So you're saying that if someone turns in their ondansetron but it's not in a blister pack, or they turn in their oxycodone in the pharmacy bottle, you're still able to upcycle that medication? Dr. Emily Mackler: Yes, as much as possible. We really try to eliminate any unnecessary medication waste. Dr. Fumiko Chino: Wonderful. Dr. Emily Mackler: We really try to eliminate any unnecessary medication waste. Dr. Fumiko Chino: I was actually really impressed about the rollout of the YesRx program. I know that you had mentioned in the manuscript that it was specifically designed to focus first on supporting the clinics in the communities with the least amount of resources serving the most vulnerable population, and then sort of later phased out to the larger, more resourced areas. And this strategy was done to create an explicitly stated more equitable, effective, and sustainable statewide program. Can you comment on how kind of this worked in practice and what the resources required by the program to keep up the quality as it's grown? Because it sounds like from what you had said initially just like, it became unsustainable with just the three groups doing it initially and had to sort of- had to get more infrastructure. Dr. Emily Mackler: Yeah, this approach was really important to us, and I think in part from the feedback, again, of these first three sites of what, we spent about 6 months really learning from them: “What if you could wave a magic wand, what would you do with just this kind of programming in general?” The most important component was sharing inventory. And as you can imagine, if you think across an entire state, perhaps what's donated in one area is maybe not needed as much in that area but needed in a different area of the state. And that sharing of inventory really couldn't exist in those first models. So that was a big priority. The second one was this recognition that the sites that could develop the program had the resources to develop them. And so we really took time and effort in contacting and working with some of the more rural oncology practices with leveraging the physician oncology organizations in the state, the Michigan Society of Hematology Oncology and the Michigan Oncology Quality Consortium, to learn from the members of those organizations how could they take part and how could we serve them best. The most integral part of us launching that way was an incredibly invested health care partner who donated storage space and pharmacist resource to YesRx, to our statewide network, and with that, we were able to engage sites that couldn't store, couldn't dispense, didn't have pharmacists at their site, but where we could engage them by having the medication sent to the central storage area and that we could have them e-prescribe to that site and we could get the prescriptions right to them. And so that was really our effort and then engaging some of the larger, more resourced practices after that point. One of the reasons that we provide to the clinic is that we want to make sure that the clinic knows when the patient has their medication in hand. We also are really with the regulatory components of the cancer drug repository program, the patient or whoever collects the medication is required to sign a recipient form. So we want to make sure that they're educated on this medication has been donated and is part of a repository. So that clinic is getting the form signed and sending it back to our central storage site. Dr. Fumiko Chino: That totally makes sense because the feasibility of doing that remotely is very challenging. Dr. Emily Mackler: Yes. Dr. Fumiko Chino: So just moving to talk about the oral anticancer drug specific drug repository programs, I know as of 2024, there are five states that have these oral anticancer drug repository programs, but there's a larger number, 28, who have just the generalized drug repository program. And I actually read a , which we'll link to in the notes for this podcast, which I thought was a super helpful guide. And I know you mentioned earlier that Michigan, although the legislation took effect in 2006, the state approved CDR wasn't really implemented until 15 years later. So it sounds like there was a gap there, and I would assume that there was some advocacy required to help kind of fight for the programs. I would love to know if you were involved in any lobbying at the state level to move the program forward because it seemed like there was like a pause there where it just wasn't moved forward. Dr. Emily Mackler: Not as much on the advocacy component at that point in time, so post-approval, and I really think the delay in our state was related to the effort to get them running and have it be sustainable. I continue to feel that kind of the closed door repositories can be challenging in the long run because the population served is more limited and isn't encompassing necessarily all the residents that could benefit from it. We have definitely been heavily involved in advocacy since our launch, however, and there are so many different components of this. One is a keen effort for us to be partially funded by the state of Michigan given the care that is provided and the resource for Michiganders across the state. Those efforts are underway. The other aspects are we have been using the program, the legislation now for the last two years, and we have some ideas on optimizing it. There are some components that if revised, we think we could serve more Michigan residents and that the program could perhaps be run smoother in different aspects. And so those efforts will be underway as well. More so advocacy wise and educating, letting legislators know that this has been in law in essence since 2006, and we're really acting on it now and serving their constituents and then how are ways that we can really optimize the programming. Dr. Fumiko Chino: I know you said in the manuscript that the program was designed to be a short term gap for a one month supply, and really only a handful of people got more than a one month supply if alternative resources weren't in place at that time. So it's clear that the programs like YesRx are a supplement but are not a replacement for the existing financial access programs. And I was just wondering if you thought that there were lessons learned from this program that can make other programs more efficient? Dr. Emily Mackler: I think without a doubt, the financial access resources could be streamlined. I think anyone you talk to in a clinic and the knowledge of the financial navigators or social workers or pharmacy staff that are working on these programs is so immense, and the amount they have to keep up is incredible. It would be phenomenal if there were a shared application or some component that would really help streamline some of the processes or even identify what is the best option for this patient. Is it perhaps changing their insurance plan versus co-pay assistance or something else? And so I do wish and think that those things could be streamlined. I think coming together and sharing resources for us has been phenomenal. If you think about waste reduction already on the end of reducing waste of medications, that's part of our goal, but we're also reducing waste or redundancies in workforce burden as far as developing policies and procedures, putting together information, networking and making sure communities know about the programming. Those are all resources that would have had to be replicated at each one of these sites that we've been able to streamline. So I do think that could benefit patients and the practices immensely. I also think on the financial toxicity for patients with cancer, it continues to be a growing problem. When I started practice, I didn't know the term financial toxicity. I don't recall it being used 20 plus years ago. And it's now such a burden. Even delays in starting treatment is something that we've been able to fill gaps for patients, and it has done an immense amount to decrease their anxiety during this journey that they're on. And so it would be nice if other programs could replicate that ease so that patient's emotional burden could be decreased in the process. Dr. Fumiko Chino: Absolutely. I personally do a lot of research on prior authorization, and even though the patient might ultimately get the medication, that wait for approval can be excruciating, outside of just the fact of not having the medication and therefore not having effective treatment of symptoms or anticancer therapy, but it's the, "I don't know when it's going to be approved. It increases my anxiety.” So being able to have that stop gap, one month prescription, I think is such an incredible resource. Dr. Emily Mackler: We help a lot of patients up front. We also do mid therapy, and the clinical implications of that are, I think, important. If you think about being on treatment and then having a break of 2 weeks or a month that's not intended, not great or not great for outcomes or adherence for sure. And the amount that that happens due to financial reasons is so much more than I even appreciated: changing an insurance plan and waiting for the new one to take effect, foundation support running up, utilizing or using up all the co-pay assistance that was available to them, so many different scenarios. And you really run a risk of some of the clinical outcomes in those situations or hearing patients split their chemotherapy dosing to try to get through those time periods. So those gaps are also gaps that we're able to fill that we feel really grateful for. Dr. Fumiko Chino: I'm so impressed by this program. We are wrapping up the podcast, so I just want to leave a little bit of time at the end if there's anything that we missed talking about, if you wanted to talk about, you know, what the future for YesRx is. I know you already mentioned sort of your ongoing advocacy at the state level to bolster support and funding for the program. Dr. Emily Mackler: I think the only thing that I would like to add is how much we've really had support from partners across the state. And for groups or states or individuals who really want to do something similar or replicate a model, we would love to have those conversations with you and see where legislation is at your point or what kind of resources could you get set up. But we really are grateful for the supports that we've had that have really been mission-aligned with us to try to reach as many patients as we can with these medications and, again, reduce the unnecessary waste. Dr. Fumiko Chino: Well, on that positive note, and I love the idea that this is the siren call for our fellow oncologists and pharmacists across the United States to sort of replicate this program, I want to thank you so much for this amazing conversation today. Many thanks to both Dr. Mackler as well as our listeners. You will find the links to the papers that we discussed in the...
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“Mainstreaming” Germline Genetic Testing: How Nongenetics Providers Can Help Fill the Workforce Gap
09/15/2025
“Mainstreaming” Germline Genetic Testing: How Nongenetics Providers Can Help Fill the Workforce Gap
Germline genetic testing can play an essential role in identifying cancer risk, guiding treatment decisions, and informing screening and/or preventive strategies for both patients and patient family members. Access to timely and convenient genetic testing can be challenging based on increased indications for testing, larger gene panels, and high numbers of positive tests which are overloading a limited genetics workforce. This is leading to long wait times and widening disparities in access to genetic testing. Dr. Chino welcomes Dr. Trevor Hoffman to discuss an intervention he helped pilot using non-genetics providers to increase access while maintaining quality. TRANSCRIPT Dr. Fumiko Chino: Hello and welcome to Put Into Practice, the podcast from the 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. Germline genetic testing can play an essential role to identify cancer risk, guide treatment directions, and inform screening or preventative strategies for both patients and patient family members. Access to timely and convenient genetic testing can be challenging based on increased indications for testing, larger gene panels, and high numbers of positive tests that are overloading a limited genetics workforce. This is leading to long wait times and widening disparities in access to genetic testing. I'm happy to welcome a guest today to discuss an intervention he helped pilot using non-genetics providers to increase access while maintaining quality. Dr. Trevor Hoffman, MD, PhD, is an associate professor in clinical medicine at the Kaiser Permanente Bernard J. Tyson School of Medicine and the Regional Chief of Medical Genetics in the Southern California Kaiser Permanente Medical Group. He leads a department of 10 medical geneticists and approximately 40 genetic counselors, serving 5 million Kaiser members in Southern California. He is the first author of a JCO OP manuscript, "," which was published earlier this year. Our full disclosures are available in the transcript of this episode, and we've already agreed to go by our first names for the podcast today. Trevor, it's wonderful to speak to you today. Dr. Trevor Hoffman: Thank you so much for inviting me on the pod. I'm really psyched about it. Dr. Fumiko Chino: Our specific topic today is something that I know you know a lot about, germline genetic testing. Despite broadened eligibility, only a small percentage of people diagnosed with cancer will undergo germline genetic testing, and I'd love your thoughts on the changes in genetic testing over your 20+ year career, and particularly, obviously for our respects, within the cancer patient population. The who, what, when, where, how, and wherefores of genetic testing and how this has evolved as our scientific knowledge has really improved over time. Dr. Trevor Hoffman: Yeah, it's been a wild ride considering everything I've seen happen in my own field. Back when I started in practice, we were doing like standard karyotypes and maybe sequencing a gene here or there by Sanger sequencing, and testing was cost prohibitive, thousands of dollars. You know, there were gene patents. You know, we were this little hidden department, like in the basement, that hardly anybody knew about, and we liked our little place in anonymity, and it was all good. Come the genomics revolution and next-generation sequencing, and, you know, all of a sudden you can, in one machine, sequence, you know, billions of letters of genetic code for hundreds of dollars. It was like a paradigm shift caused by technology. So that and the removal of gene patents, we've come, you know, in the ensuing years to hereditary cancer gene tests that's, you name it, depending on whether it's done 20, 30, 40, 70 genes for under $500 in most cases and can be done in a matter of a couple of weeks. That's a bit of a massive change. In oncology, we've seen that happen in terms of tumor NGS, right? Like, things are changing for all of us rapidly. And so multiply that across every specialty. In my field where we used to own every genetic test, like genetics would kind of order every test and determine who needed testing, that's not going to happen. Like, it's not going to work anymore. So we have to come up with better ways to sort of put it into the hands of people, make it easy, make it appropriate to maintain access. We can't do the white-glove service anymore where we see every single patient and touch every patient. That's the shortest version of my career in a nutshell. And you're living this too, right? Like many people listening to this podcast train oncology, like tumor NGS didn't exist, you know, and now all of a sudden it's like standard of care in our system. And you know, people have had to just learn by the seat of their pants. And so we're all in this crazy roller coaster together. Dr. Fumiko Chino: Yeah, it seems like the proliferation of testing and the vitality of the information gained from it, how important it is, it is unsustainable for the genetics workforce to stay in their closed basement system. As a radiation oncologist who lives in a basement, we have enough people in the basement. We're hoping to integrate them a little better into the larger community. Now, you were the first author of this recent report on the 3-year experience of mainstreaming hereditary cancer gene panel testing at Kaiser Permanente Southern California. Do you mind briefly discussing the background of what led to this project - again, sounds like limited workforce - and what your study team actually did, and then the actual findings? Dr. Trevor Hoffman: Yeah, I'd love to. So this kind of arose from, and mainstreaming is essentially in the genetics field, we call that like handing a test to a non-genetics provider to order. So that's kind of the term that has been applied to that. And essentially, we have to do that. And so this kind of arose through some personal relationships I had with cancer providers in our system, a couple of whom were down the hall from me. One of them was a GYN ONC provider, and the other was a breast surgeon. And so, I had both our breast surgeon and our GYN ONC doc approached me and say, "You know what? I'm seeing all these women and they have ovarian cancer, or they have breast cancer, and I know I'm doing surgery on these people. They need a hereditary cancer gene test. It's a no-brainer. And so I have to see them. I schedule my surgery. If it's breast cancer, I'm like, I'm not sure what the surgery is, and this woman may be 45, and it's like, well, I don't know what surgery to do, but we schedule a surgery in three weeks. We refer them to genetics. Genetics sees them, schedules an appointment, orders the test, the patient goes to the lab and gets the test.” That all sounds great, right? But the patient may be overwhelmed. They may not know the importance of getting that appointment scheduled very quickly. In our system, we're under a regulatory guideline to see people within two weeks, but in lots of genetics practices out there, there are wait lists that are a year, two years, three years. The patient may not understand why the surgeon wants this result, right? And it's, you know, I listened to your last podcast about parking charges, right, being a barrier. So like, we're putting up all these barriers for patients with cancer, and then if the patient didn't get the test or do it, the surgeon's like, “I’ve got to cancel my surgery,” and they're calling me. And so we kind of were like, "Hey, wait a minute, like, can I just order this myself in the surgery clinic or in the GYN ONC clinic? Because it's making their life easier.” So it kind of arose out of one of these rare things in medicine, right? Like a win, win, win. For them it's a win. They need the info quick. They want to schedule their surgery, they want to know what they're doing. For the patient it's a win because then they don't have to make an appointment, pay the parking fee, all the barriers of getting that appointment done. And from our point of view, it's a win because like, I know before that patient walks in the door, I'm ordering that test for a 45-year-old woman with breast cancer, like it's a no-brainer. The other thing I would say is that from the point of view of the patient, seeing me for like a separate 60-minute appointment to discuss testing in that venue, they've got so many other things on their mind. The ability to hold onto all that information is just limited. So, you know, we see people and we still do in some contexts in these multidisciplinary clinics, but the retention of what I'm telling patients, honestly is low. They're worried they're going to die. They're worried about, “What surgery am I going to have?” “What am I going to do about my job?” And so we started doing it on a small scale, but the main thing was making it logistically easy for them. That's the key, is making it as simple and efficient as possible. And so for us, that was putting an order in our EMR that was like a couple of clicks. And then taking the worry off their minds that like, they're not going to be stuck like backpedaling and trying to counsel a patient. Like we're going to be there for you to counsel that patient when they're positive, right away. A lot of it's about reassuring and just making it easy and trust. And so like without that, like this never would have happened, you know, everybody would have stayed in their silo. So out of that, we kind of grew it and we're up now over 20,000 tests that have been ordered by oncology providers, physicians, case manager nurses for our breast cancer coordinators, PAs in some cases, nurse practitioners, all these people are doing this with clear guidelines, right? Like very clear indications for ordering and an assurance that we're going to see the patients who need to be seen. Dr. Fumiko Chino: Phenomenal program. I mean, to be honest, the waiting when there's more pressing things on your mind, to kind of get this sort of checkbox, “Okay, I'm negative, I'm going to, you know, I have a better clear decision-making chart for the type of surgery is,” can be excruciating for both providers and patients. And it's also just wasteful, I think of a lot of people's time. I think you're accurate, which is that the subtleties and the decision-making flowcharts of genetic testing have been somewhat because of broadened eligibility at this point, it's more limited. There's less of the, “Okay, it was a second cousin who had a diagnosis, but we're really not sure if it was actually breast cancer.” Like, it's much more of like, “Okay, if you're younger than 50, you qualify for genetic testing.” Dr. Trevor Hoffman: Yeah. And we made the process very simple. Like anyone with breast cancer under 50, anyone with epithelial ovarian cancer, anyone with exocrine pancreatic cancer. So like stuff where, yeah, I agree. The NCCN drives me nuts because every six months they create this like Byzantine-like algorithm of indication. I think it's crazy. I can't keep up with it. So it's not fair to expect someone to climb through all that stuff. Make it simple. And we're in this sort of slow-moving period where we're just moving to universal testing, probably first for everybody who just gets cancer is the next threshold. And even in breast cancer, like the American College of Breast Surgeons says everybody with breast cancer should get hereditary cancer testing, whereas the NCCN isn't quite there, but we're moving towards that. Like everybody who gets cancer gets germline testing. And then shortly after that, we're probably going to be at population screening. It's coming. Will it get there in my career? I bet. Dr. Fumiko Chino: Now, there were two recent JCO OP articles focused on genetic testing in prostate cancer. There was the “,” and then also . And what kind of struck me about both of these papers was that one, everyone with metastatic prostate cancer now qualifies for germline testing, which was news to me as someone who doesn't treat prostate cancer. But that two, patients really may not view testing as a priority. They may delay or decline testing because of either cancer treatment burden or some of the people had actually already gotten tested in the interviews and had just forgotten they'd even received testing. The studies kind of highlight that implementing germline testing at scale in eligible populations can be really challenging. I know you talked a little bit about trying to dummy-proof and facilitate these easy clicks with the EMR, but can you talk about the specific provider or patient barriers that you've encountered in your practice and outside of the mainstreaming? Dr. Trevor Hoffman: Well, you can make arguments in a lot of different directions here, right? So the other frustration I didn't bring up at the beginning for our oncologists, GYN ONC surgeons, and breast surgeons was they'd send the patient over to me and they don't know me from a hole in the wall, whereas that surgeon may have saved my life, right? Like I'm going to do what that person says. They'd come and see me or a genetic counselor, and you know, we offer the patient testing and you know, we kind of want them to be able to choose and all that. And then they're sort of like, "Oh, I do- I may- I don't really need this, you know, maybe I do need this, whatever." And so then the patient would like decline it, and that's fine. I don't want to push tests on people, but there's also a patient-provider like thing there when the oncologist or the surgeon or the GYN ONC is recommending or offering a test, that relationship with the patient impacts whether they do it or not. And so that is a barrier. You know, I honestly see fewer barriers for doing testing in mainstreaming. And honestly, you know, in our system more tests are being now ordered by mainstream providers than by my own department in our system. It actually, it took a couple of years to get there, but we started this in 2021, and we reached a threshold where non-genetics provider test orders actually surpassed our own department about a year ago. And it's been steadily going up. So I honestly feel like there's fewer barriers when mainstreaming is employed than not. Now, do all patients get the same level of pre-test counseling? No, they don't. And I think we just have to make rational choices and understand that like we can do things one way and not reach a fraction because we know 80% of the people with BRCA1 and 2 aren't diagnosed. So like we have to make some choices. I think on the balance, I favor access over not. So I don't see a lot of barriers. Now, are we doing other things to try and find these patients out there without looking in the people, the population with cancer? Sure. We know again, we know population level screening is coming. And so we're piloting some things like an email questionnaire that's being sent to Kaiser members where they're asked a series of questions about their family history of cancer. And without ever talking to a human, answers to those various questions can generate a hereditary cancer gene panel order that then the patient goes and gets, and they never talk to a person when that happens. It's all through an online thing, and we see the positive patients in that setting to counsel them. And the patients who have negative results or VUSs, get some information about what that means and doesn't mean, and we can always talk to them, they're able to call us. But we know this time is coming and change is coming, so we're trying to like grapple with like how that's going to happen. Dr. Fumiko Chino: You mentioned VUSs and that's actually my next question because the VUS is like the thyroid nodule, the bane of my existence. Dr. Trevor Hoffman: The lung nodule, sure. Dr. Fumiko Chino: Yes, the lung nodule, the thyroid nodule, exactly. And with the rise of these germline testings, we're just seeing so many increased diagnoses of VUSs, the ‘variant of unknown significance’. Your study found that they were two times more common than an actual pathologic or likely pathologic variant, again, that's consistent with what I've kind of seen before. And about one-third of people who were tested actually had at least one. I noticed that in your study, the VUS result actually triggered one of the automatic patient emails, there was a VUS-specific messaging content, there was a chatbot link and results, but it didn't automatically shepherd you to have a conversation with a counselor. And I've certainly had in my own clinic some kind of difficult discussions with patients because VUS, like we don't know what we should do, it doesn't necessarily change our management, but it's not very satisfying, especially if it's in one of those kind of high-value genes. What's your approach to explaining VUSs? How many people on the study - I noticed that they could request a visit with a genetic counselor - did you have a lot of discussions about VUSs based on this mainstream testing? Dr. Trevor Hoffman: I'm going to just comment on something you said in the question, which is like, we don't really know what to do with these. And I'll be honest with you, like, I don't either, right? Like I don't have any magic. There's no curtain to pull back, like, you know, and the Wizard of Oz. So I think VUSs are a problem for everybody. Again, we just have to make choices here, I think. At the end of the day, we're not tracking this as a data metric. We aren't getting tons of consults, given the number of tests that we're doing. We're not getting tons of requests by patients or providers to do a consult specifically for a VUS. But again, at the end of the day, like I'm not going to be able to change that variant classification, and you truly shouldn't be using VUSs to make decisions. That's just the truth. You really should be using things like other factors. And again, nothing provides certainty, right? So is the family history consistent with a hereditary condition? Is the patient's personal history or tumor type strongly suggestive of that? You’ve just got to make the best decision you can. And when we rolled this out, we said, "Look, we're happy to take a consult if you if you want." And again, I understand like from people that look at this, there are suspicious VUSs and there are like ones that are completely can be written off right away. And those are tough. So we always, and we told people all the way like if you're not comfortable explaining this or the patient's asking you a million questions, we're happy to see that patient. It's not a huge uptake. And honestly, at the end of the day, like VUSs are just right now going to be with us for a while. And again, I'd rather diagnose a ton of patients that have a known pathogenic variant than spend that limited amount of patient hours we have talking to a patient with a VUS. Yeah, a third of all patients have a VUS. Most VUSs are probably normal human variation. The reclassifications that we get, you know, 90, 95% go to likely benign, maybe 5 to 10% are so-called upgraded to pathogenic. If you ask me how many VUSs are in your genome, it's tens if not hundreds of thousands of VUSs, depending on what we're sequencing, right? If we're sequencing exons, it's probably thousands, tens of thousands. If we're looking at everything, it's hundreds of thousands, right? So we're dealing with a little bit of difficulty with human nature, which is when we see something like put on a report, we have this immediate inability to ignore it. I don't have any magic answers, but a lot of the time, these are just me or whomever explaining that we really don't know what this means. For some people that's helpful, and for some people it's just kind of like, "Why did I do this for?” - the patient...
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Promoting Resilience in Adolescents and Young Adults (AYAs) with Cancer via Developmentally Targeted, Evidence-Based Interventions
08/18/2025
Promoting Resilience in Adolescents and Young Adults (AYAs) with Cancer via Developmentally Targeted, Evidence-Based Interventions
An estimated 85k adolescents and young adults (AYAs) between the ages of 15 to 39 will be diagnosed with cancer in the United States this year. AYAs with advanced cancer face care gaps for psychosocial support and communication. A recent paper published in JCO OP titled “” detailed the findings of a clinical trial testing a skills-based coaching program with the goal of decreasing psychological distress and improving quality of life. TRANSCRIPT Dr. Fumiko Chino: Hello, and welcome to Put into Practice, the podcast from the 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. An estimated 85,000 adolescents and young adults (AYAs) between the age of 15 and 39 will be diagnosed with cancer in the United States this year. Although this accounts for less than 5% of all cancers, AYA cancers have been rising over the past decade, and AYA survivors have unique survivorship needs, including physical, emotional, social, and spiritual communication. A recent paper published in JCO OP titled "" detailed the findings of a clinical trial testing a skills-based coaching program with the goal of decreasing psychological distress and improving quality of life. I'm excited to welcome two guests to the podcast today to discuss optimal care for the AYA population. Dr. Abby Rosenberg, MD, MS, MA, is the Chief of Pediatric Palliative Care at the Dana-Farber Cancer Institute, Director of Pediatric Palliative Care, Boston Children's Hospital, and an Associate Professor of Pediatrics, Harvard Medical School. She is also the current designated pediatric oncologist at the ASCO Board of Directors. Both Dr. Rosenberg's clinical approach and her research focus on helping patients facing critical illness live their best lives and for as long as possible. Specifically, she and her team develop programs that help patients and families build resilience and optimize quality of life. She is the first author of the published trial we will be discussing today. Dr. Lauren Ghazal, PhD, FNP-BC, is an Assistant Professor and researcher at the University of Rochester School of Nursing. As an AYA cancer survivor herself and a family nurse practitioner with a background in economics, she brings a unique perspective to cancer care delivery research. Dr. Ghazal completed a postdoctoral research fellowship at the University of Michigan on an NCI T32 in cancer care delivery after earning her PhD at NYU, where her dissertation focused on work-related challenges and financial toxicity in AYAs. Our full disclosures are available in the transcript of this episode, and we've already agreed to go by our first names for the podcast today. Abby and Lauren, it's wonderful to speak to you. Dr. Abby Rosenberg: Thanks for having us. We're so happy to be here. Dr. Lauren Ghazal: Yes, thank you for having us. Dr. Fumiko Chino: Our specific topic today is: improving outcomes for the AYA population. Abby, do you mind starting us off by sharing some background on this trial and giving us a brief overview of the study and your findings? Dr. Abby Rosenberg: Yeah, I'm happy to. And thanks again for having us. You mentioned, Fumiko, the prevalence and problems that adolescents and young adults with cancer often have. One of the things that I like to point out is we know that if you're diagnosed with cancer as an adolescent or a young adult, you have higher risks of poor psychosocial outcomes forevermore compared to younger pediatric or older adult counterparts. With that in mind, we have been thinking for a long time about: how do you promote well-being and resilience in this particular population? One of the things that we also know is that adolescents and young adults with advanced cancers, those that have recurred or progressed through initial treatment, not only tend to be less engaged with a lot of the really important conversations that we have in healthcare, but later on, especially if their time becomes short, they tend to regret that disengagement. And so what we had done in our previous research is we had created this program called PRISM, and that stands for Promoting Resilience in Stress Management. And PRISM was a peer-to-peer–based coaching program designed by our team in partnership with AYAs for AYAs, specifically to help them navigate these stressors. And what it does is it leverages simple, reproducible, evidence-based what we call ‘resilience skills’. And these are things like skills in stress management, setting goals, cognitive reframing - that's how you appraise a situation - and then benefit-finding or meaning-making. And our prior randomized trial suggested that PRISM compared to usual care amongst adolescents and young adults with early-diagnosed cancers improved their resilience and their hope and their quality of life, and it reduced their psychological distress. In those studies, teens and young adults who had advanced cancers said, "Hey, you know what? These skills really helped me navigate this first experience, and now that my cancer has come back, what I really need help with is applying these skills to these really hard conversations I'm having with my medical team and with my family." So the current study that you are talking about today really tried to ask the question of: could we combine our previous PRISM projects with some integrated advanced care planning communication skills for AYAs with advanced cancer? And if we did that, could we improve some of these important outcomes? And so what we did was we randomly assigned 144 adolescents and young adults with advanced cancer to either PRISM or usual care. In this study, PRISM included those same four skills - stress management, goal setting, cognitive reframing, and benefit-finding - plus an optional component where they could engage in formal advanced care planning skills. And then we saw what we got at 3, 6, 9, and 12 months. Amongst the 144 people who enrolled, their average age was about 16 and a half years, and they were half-half male and female. Within the first 3 months, the people who got usual care, not PRISM, did better with their quality of life. It's not what you want to see as an investigator. But the people who got PRISM did better with their hope and their resilience skills. And then I think what was more important is over time, the improvements in the usual care arm, they weren't sustained. And in fact, the people who got usual care instead of PRISM tended to kind of bounce all over the place with their psychosocial well-being. There was really no predictability, and on average, they did worse over time. But on the other hand, people who got PRISM not only immediately improved that resilience and hope at 3 months, but then they had sustained and continuous improvements in quality of life and distress. They were more engaged in things like advanced care planning and conversations with their doctors and nurses over time. And the overall suggestion of those data is that building skills and resilience and hope early on can lead to lasting improvements in overall well-being. Dr. Fumiko Chino: That is a fantastic overview of the trial, and again, I love this concept of building from within, you know, what started with a peer-to-peer type program and realizing that these skills are so helpful to people going through any kind of critical illness. Now, Lauren, I'd love your take on why this type of study is important, why interventions in the AYA space can be so challenging to develop and test. So, for example, in this trial, one-third of the intervention group discontinued sessions because they were either too busy or too sick. Dr. Lauren Ghazal: Yes. And thanks again, Fumiko, for the introduction and for having me here. As you mentioned in my introduction, I'm an AYA. I was diagnosed at 26 with stage 2 Hodgkin lymphoma. And as many of us AYAs in the advocacy space, as you know, at the time of diagnosis, I was doing far more important things in my life than wanting to worry about and deal with cancer. And so when cancer came very dramatically into my life, I had to tackle it with whatever, as Abby said, resiliency skills and resilient skills that I had built up to that point. I was 26, so 10 years over the median age of Abby's study, but that's what I was left with at the time to deal with my diagnosis and my survivorship. So I was also working as a family nurse practitioner in primary care, and I was also in my first year of a PhD program in nursing research. So I had caught that nursing bug to be a researcher really early on in my clinical training. And I remember seeing this paper come across my inbox a few months back, and I was so excited to read this publication. As an AYA, I'm always like selfishly so grateful to see work being done in studying resiliency and stress management and overall quality of life because I feel like I'm constantly kind of suffering with that and really trying to understand kind of how do I separate my AYA advocacy role and my personal experience in this work, and then also as a researcher in the AYA world. And so, yes, very excited to see this study. And we all know AYAs face these unique challenges, challenges that include high symptom burden, developmental transitions, these competing life demands that can make participation in research particularly complex. I know firsthand how overwhelming having a cancer diagnosis can be during this life stage that's already filled with so much uncertainty. And so when you're straddling again this independence-dependence as an AYA, for me again, just beginning graduate training and trying to make sense of who I was, who I was becoming, all of these competing demands that can complicate not only how we experience care, but how we also engage with research. So I think when I think about Abby's study too and something that you had mentioned in the overview is really like the time investment of putting up this hard work up front of building the resilient skills that maybe you didn't see it within the first 3 months compared to usual care, but later on in the 6- and 12-month time point, that's so critical to promoting resilience and sustaining that resilience not only throughout the rest of your survivorship and navigating, you know, your healthcare engagement, but also your overall life skills too. And so I don't think you even know this, Fumiko, for as well as you know me, that I actually participated in another clinical trial on resilience and stress management. And this was 5 years ago now. And I actually pulled out the toolkit that we were given really early on this year when there was a lot of other stressor trigger points in my life, and I did one of the activities, and it was really just on targeting the trigger points, the stress points, and then trying to kind of address what I had control over in that moment, right, what was out of my control. And so that's 5 years. We know that we have not a lot of funding available that we can study AYAs for 5 years in these clinical trials, but they’re skills that are really that you're using for the rest of your life. And so being able to capture that, I think is just so important. That was one thing I wanted to take home here was that I used those skills that I learned 6, 7 years out from that trial. Dr. Fumiko Chino: I was going to ask you a follow-up question to see if anyone had ever actually tried to develop coping skills for you as part of your standard of care, and it sounds like as part of a clinical trial, actually, you did get some of those, that development of those skills, and they're still paying off for you 5 years later, which is phenomenal. And I think we'll see potentially people on Abby's trial still benefiting in survivorship, be that as it may, in years if they get to that point, which is, you know, again, the whole goal of trying to think about resilience and building hope and sustainable interventions. Now, this study was really focused on patients in the early adolescent and young adult ages 12 to 24 on the trial and was recruited from the children's hospital pediatric cancer departments. Abby, as part of your clinical experience as a pediatrician, what are the potential differences in the cares and needs of the younger versus the older AYA population? From my own experience, I can give you an example. I remember when my husband was diagnosed with cancer in his 20s, one of his team members referred to him as, quote unquote, "basically a pediatric case." It kind of hit me sideways at the time, but in hindsight, I can actually understand how being treated in the pediatrics department could have had some unique advantages, especially with wrap-around services at the end of life. Dr. Abby Rosenberg: I so appreciate that question, Fumiko, and I feel like I first want to apologize on behalf of all oncologists for the way that your husband received or heard those words because I think the beauty of AYA oncology is that we really want to find the right place for people. And the way we balance it, before I answer your question, is I think there's two domains that people think about. One is what kind of cancer does this person have? Because there are a lot of, quote, “pediatric” types of tumors, and those types of biologies, those types of cancers are things that adult medical oncologists just may be less familiar with and we pediatric oncologists know how to treat really well and vice versa. So like if a young woman came into my clinic with breast cancer, I would be like, “Yeah, we don't do that in peds, you need to go across the street to the medical oncologists.” If the goal is, we need the best oncologist to treat and hopefully cure you of your disease, then that's decision point number one. Decision point two is: what is the developmental and psychosocial place that you are in in your life? And so similarly, you know, AYAs are defined by the National Cancer Institute from people between the ages of 15 and 39, and that is an enormous developmental age spectrum. And my 15-year-old patients are really different than the 35-year-olds across the street. And so what we think about in this sort of triaging of where people should go is are you still living with your parents? Who are your decision-makers? In pediatrics, we are inherently family-centered. Like, we do not ever make decisions in isolation with patients, at least I should say very rarely. It's always understanding that they are in a dynamic of relationships and other caregivers and loved ones. And that's somewhat different in adult cancer centers where the patient can have a lot of private conversations with or without their caregivers. The other thing we think about a lot in pediatrics is people are still developing in their autonomy, their identity, many people are still on their parents' insurance, many people need caregiving support full-time, and it's different from if you're an independent young adult. And so we sort of think about how do we provide all of the services that you need. You mentioned wrap-around services. So now I get to stand on my ‘pediatrics is better’ soapbox. We in pediatrics practice these holistic ways of approaching healthcare in general. So in most pediatric places, every person with cancer has an assigned social worker. They often have access to things like psychology and child life and music therapy and art therapy and school rehab, and there's schools embedded within the children's hospitals and all the things that you can think of to try to maintain your life track as best we can while you're going through all the stressors of cancer. As you said, I'm a pediatrician, I'm a pediatric oncologist. My focus has been in AYA oncology, but in the pediatric space, and we thought about, should we also enroll people who are in the adult medical oncology centers, and we realized that that quote “usual care” would be so different between groups depending on where people were receiving their oncology care that we just decided for the rigor of the science to focus on pediatric centers. And I think what's kind of cool about that is if you imagine usual care in pediatrics is pretty high bar, like you get a lot. If PRISM is still better, that says something about what we are missing even in pediatric oncology care, let alone what the rest of the oncology treatment centers might be missing too. Dr. Fumiko Chino: Absolutely, absolutely. And again, not to dog on adult cancer services or to speak the benefits of pediatrics, but I definitely see that gap certainly in my own clinic and from my own lived experience. Now, Lauren, I have certainly heard from other AYA survivors in their 20s and 30s that they felt that sort of they were between worlds during their cancer treatment and just survivorship. Many have to maybe even move back home or they might need family caregivers during their treatment, and this can cause really a disconnect in identity that can also add to stress and anxiety. In your opinion, how can we be supporting AYA survivors' psychosocial needs better? Dr. Lauren Ghazal: Yeah, that's the million-dollar question. And I want to preface this by saying that it's so difficult to speak on behalf of all AYAs, and I can never do that. And I say this a lot, but we know this, the NCI, ACS knows, the one-size-fits-all for survivorship model does not work, especially for AYAs, and Abby alluded to this very wide age range that we see in AYA cancer survivorship. I think that there are really great programs across the nation that standardize AYA formal programs that are being designed, that are being implemented across the many different areas of AYA survivorship that Abby had mentioned including financial navigation, getting financial services, psychosocial support, embedding psych and mental health therapy into those survivorship programs as well because those are the biggest barriers for AYAs is being able to access mental health providers that are trained in seeing AYA patients. And for many AYAs, I've been hearing more and more from friends of mine that they had to transition to a new mental health provider, which we know is so difficult during that period of diagnosis. I would also say too that there's a lot of research being done at UNC in their, the University of North Carolina Chapel Hill, in their AYA program in implementing their AYA Needs Assessment or their Bridge that Dr. Emily Haines has developed, and I know they're undergoing a bit more testing too in shortening that. But when I look at that too and I see all of the different areas that AYAs endorse as these top unmet needs and then really being able to screen and identify in one place that, "Okay, there's more support needed here." That's when then there can be tailoring done. But to actually centrally funnel in through a standardized assessment that can be implemented, and then also recognizing that not every cancer program and AYA program across the nation has every answer and every resource available. And so being able to say, "Okay, we have these formal connections not only with a local AYA organization but also nationally through incredible organizations like Triage Cancer and Cancer and Careers or through the Cancer Support Network." Those have been areas that I've, you know, have really tried to push for is really strengthening referrals to address the health-related social needs of AYAs more formally through community-based organizations and then also streamlining a needs assessment for AYAs. Dr. Fumiko Chino: I often think about the challenge for someone who potentially could travel or maybe should travel to receive specialty care at these large centers that have so many resources versus staying closer to home where they have more support, where it is a lower cost, right? And trying to figure out what's really worth...
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Incomplete Reporting and Toxicity-Minimizing Language in Oncology
07/21/2025
Incomplete Reporting and Toxicity-Minimizing Language in Oncology
There is often a disconnect in toxicity assessment between what is reported on clinical trials as being “well tolerated” and the lived experience of taking a treatment for patients. Toxicity minimizing language including “safe” and “tolerable” are subjective and can downplay quality of life limiting side effects from treatment. A recent paper published in JCO OP reported that less than half of phase 3 clinical trials had “complete” toxicity reporting including total adverse events, deaths, and discontinuation due of toxicity. Dr. Chino welcomes two guests to discuss patient-centered clinical trial design with a focus on side effect profiles of treatment. 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. There is often a disconnect in toxicity assessment between what is reported on clinical trials as being, quote-unquote, "well tolerated" and the lived experience of taking a treatment for patients. Toxicity-minimizing language includes words like "safe" and "tolerable." They are subjective and can downplay quality of life–limiting side effects from treatment. A recent paper published in JCO OP reported that less than half of phase 3 clinical trials had complete toxicity reporting, including total adverse events, deaths, and discontinuations due to side effects. I'm overjoyed to welcome two guests to the podcast today to discuss patient-centered clinical trial design with a focus on side effects from treatment. Dr. Ethan Ludmir is an Assistant Professor at MD Anderson Cancer Center with a primary appointment in GI radiation oncology. He is a prolific researcher on topics encompassing clinical trials, cancer outcomes, and the integration of biostatistics in oncology. He has a specific interest in improving clinical trial design, including designing patient-centered endpoints and complete reporting. He led collaborators in the manuscript that will frame our discussion today called, "," which was published earlier this year in JCO OP. Stacey Tinianov is the executive director and co-founder of Advocates for Collaborative Education, a global advocacy organization uniting patient, research, and policy advocates through pan-cancer collaborations, basic and advanced advocacy education, and the sharing of leading practices to change the narrative in cancer outcomes. Following her diagnosis and treatment for early-stage breast cancer 12 years ago, Stacey has become a leading national voice for patient advocacy and empowerment via collaborative education, community building, shared decision-making, health data access, and person-centered design. Our full disclosures are available in the transcript of this episode, and we've already all agreed to go by our first names for the episode today. Ethan and Stacey , it's wonderful to speak to you. Dr. Ethan Ludmir: Terrific. Thank you so much for having us, Fumiko. It's a pleasure to be here with friends and colleagues of many years to be able to talk about this important topic. Stacey Tinianov: Yes, thank you. Delighted to be invited, delighted to be part of the conversation. Dr. Fumiko Chino: Our specific topic today is toxicity minimization, either by underreporting or by language and framing that downplays the lived experience of treatment. Ethan, do you mind starting us off by telling us how you got interested in toxicity reporting and then briefly discussing what your study team did and the findings? Dr. Ethan Ludmir: Absolutely. Thank you, Fumiko. I have the privilege and luxury of being able to present research that is 100% the brainchild and terrific work of colleagues and friends, including the first author, a terrific graduate student named Avi Miller; colleagues like Alex Sherry. So I think it's always important to acknowledge I'm here mostly for window dressing. They really did the lion's share of the work and really have reported this fascinating story. Our lab works primarily on issues related to the optimization of clinical trial design and reporting. One of these key topics that has come up more and more over the course of time is how are we presenting toxicities? And so we gave this project the sort of cute name of "The Table 3 Fallacy." Right? When you present a clinical trial report, usually Table 3, just by the way things end up getting numbered, is generally where you find these toxicities. You see a massive Excel sheet of reported toxicities, and invariably it ends up kind of culminating in a sort of pithy couple of sentences saying, "Toxicity was manageable." So we wanted to really drill down on this with sort of two features in mind. One of them was, how well are we doing at objectively reporting physician-assessed toxicity? And of course, that comes with the itinerant kind of limitation that all three of us have both written about and talked about, that is physician-assessed toxicities are very different than patient-experienced toxicities - and maybe we'll put that to a side for one second - but objective toxicities on one hand and then subjective characterization of those toxicities on the other. So for this project, we looked at, we've sort of cultivated over the years an actively updated database of every phase 3 trial that's been completed in clinicaltrials.gov since the website's inception. And so in this report, we looked at over 400 trials representing over 300,000 patients enrolled. And we wanted to assess objectively how many trials reported in their manuscripts serious adverse events, treatment-related deaths, study therapy discontinuation, and an emerging area that really bears some emphasis, which is reporting of lower-grade toxicities. And I know we're going to discuss this as this moves forward, but especially in the last few years, this has entered visibility as an area that we really ought to be emphasizing more. As a sort of anecdotal point, it's very easy to characterize a single grade 3 episode of toxicity that potentially is self-limited. But on the other hand, if you've got a patient who has the misfortune of having grade 2 nausea day in and day out - sure, that's grade 2, but that can be much more impactful on somebody's quality of life. So being cognizant of these kinds of differences is important. So we went through these 400 trials and objectively categorized using pre-established guidelines how many reported serious adverse events, treatment-related deaths, study therapy discontinuation. And the answer is only 44% of trials consistently do this. We added and created sort of our own guideline - everyone comes up with guidelines these days, so we said we're going to do our own guideline - and add into the mix reporting of lower-grade toxicities. And if you call "complete toxicity reporting" doing what's been done before and reporting lower-grade toxicities, then only 32% of trials report out these complete toxicities. And perhaps the most interesting covariate there is that our industry-supported trials, which increasingly dominate the scene, those tend to do a better job at reporting toxicity profiles than cooperative group–sponsored studies. And we can kind of dissect that, perhaps, on the back end. And the final point is we looked at how often investigators are using language like, "Study therapy had toxicity that was acceptable or tolerable." These subjective languages that fundamentally minimize the experienced toxicities. And the answer is nearly half of trials report- have that language in the study text itself, often in the discussion section or the abstract. And this is what's picked up, right? This is what our patients read. This is what news outlets read. And I think this really fundamentally undermines a lot of the nuances here. But if you let me keep talking, I'll just keep talking forever, so I'll stop talking. Dr. Fumiko Chino: That was a really excellent summary of what your team did, and I agree 100%. Give credit where credit is due. It is a whole team that brings research like this to publication, and so I really always respected the fact that you have worked in very large teams and have given due credit to people like trainees along the way that are doing some really elegant work under the auspices of the- I'll just call it ‘The Ludmir Lab’. Now, as you mentioned, patients may really consider side effect profiles very differently than what investigators determine could be, quote-unquote, "clinically relevant." Stacey, I'd really love your take on the toxicity topic and how you've seen this play out in both the advocacy space and in your role as a scientific advisor. Stacey Tinianov: First of all, I am truly thrilled that all of this is being examined. We know that words matter. We know that we've managed to change our collective language in the oncology space and our understanding significantly of that impact in the last 10 years. We've modified phrases like, you know, "patients failing treatment" and we've moved to what is kind of more “what actually failed patients”. So, you know, I think the key piece there is when we describe things like "manageable" and "tolerable" in scientific publications or in that Table 3, we are looking at “clinically relevant". And so I want to acknowledge that when you talk to people in clinic, you know, "manageable" means that there's a way to clinically manage a side effect. "Tolerable" means that treatment can continue. So we understand where these phrases originated from. However, as Ethan mentioned, these terms have very different meanings in day-to-day living. I spent some time actually quite recently at the FDA talking about the gratitude I have that, you know, safety and efficacy is a primary concern for the FDA because as advocates and certainly as patients, we care about safety and efficacy. But we also are incredibly concerned with quality of life, and it's particularly important to say because all of these great therapies are only great therapies if individuals can stay on them. And if these so-called "manageable" and "tolerable" side effects, as they start to accumulate, people have to come off treatments, well then all of that incredibly hard work and all of those resources to bring something to market are for naught. The other thing I think it's highly dependent on individuals, and I think that, again, when we quantify and when we, you know, qualify something, we have to do it kind of in a population setting. And yet I think we need to acknowledge that all individuals are different, and something that may truly be "manageable" and/or "tolerable" in one individual might not be in another. And so I think we need to make room for that. And the reason the language is so important is so we can make those choices. We can weigh the benefits to the risks, not just on a cellular level, but on an impact level. So again, so excited to have this conversation. Dr. Fumiko Chino: I love that personal take on it, which is that it is personal. You have your own experiences, obviously, with toxicities, but that individuals may not be comparable across each other and aggregate number on a spreadsheet is very different than lived experience. Stacey Tinianov: When you look at those hundreds of thousands of individuals, those were the cancer Olympians. Those were the individuals that qualified for a clinical trial because even though they were sick and in some cases very, very, very sick, they were the best of the best. And so that toxicity profile is on a population that has actually made it into a clinical trial. But once a drug is approved and once it's put into market, it's potentially available to anybody, and so we see those side effects, you know, sometimes in a much more complicated situation. But too, you know, again based on the individual, even if this drug gets out and it's the same diarrheagenic profile for one individual as another, the impact of that on a quality of life is very, very different. Somebody who really enjoys sitting outside and birdwatching and hanging out with friends and reading books, as long as they’re within ten feet of a bathroom, the diarrheagenic effects of a drug are going to impact that person probably far less than somebody who rates their quality of life on how many summits they can peak. Dr. Fumiko Chino: 100%. I can even say for my own lived experience, when my father-in-law received cancer treatment, they actually chose one of his treatments based on the fact that he is a guitar player, and so they really wanted to minimize his risk of peripheral neuropathy. And so, you know, instead of cisplatin, they chose cetuximab for his treatment, even though it is maybe suboptimal in a straight numbers comparison, but the toxicity was very meaningful. Now, there was another recent JCO OP study published this year focusing on patients with melanoma on immunotherapy. It found that of the 70% of patients with any toxicities, about half of them were, quote-unquote, "only" grade 1 or 2. But in this so-called "low-grade toxicity," 15% were hospitalized, 31% had treatment stopped because of toxicity, 33% needed to go on an immunosuppressive medication. Now, Ethan, do you mind putting this into perspective from the kind of clinician and clinical trialist standpoint? Dr. Ethan Ludmir: With pleasure. And this is a terrific piece and really highlights and informs a lot of the reasons that complete toxicity reporting is crucial. Right? We need to know about the grade 1-2 side effects because invariably, as much as we like to relegate those to second-class status in how we've to date been characterizing physician-reported toxicities, clearly, there's a dramatic impact in many of those toxicities on people's ability to tolerate therapy, their ability to require additional intervention like immunosuppressives, and it's really quite central in the way we think about things. The other facet, I think, that's increasingly relevant here is the treatment discontinuation aspect of things is one that increasingly from a statistical perspective comes to the fore. We've written about this before in a couple of different pieces, but it's something that I'm not always sure gets enough billing, which is that study therapy discontinuation is often not considered an event. And so when you design Kaplan-Meier curves and you report these out, those patients are censored rather than marked as having an event. And so you get weird statistical effects of how those curves are perceived because you're almost ignoring the folks who had the toughest time with the therapy when those are among the most informative patients when you're thinking about things from both a large-scale regulatory perspective to Stacey 's point, and again to Stacey's point, the individual in front of you. So I mean, it's a terrific piece of work and also speaks to, as we think about the era of PROs really getting more and more mature in how we analyze them and integrate them into our trials, it also speaks to the challenges of just objectively quantifying toxicity from a physician perspective as tick mark “That is one grade 3 toxicity.” Can we make this multidimensional? Are we thinking more about the time perspective? How long is the grade 2 toxicity going for? Are you having a day of nausea or continuous nausea for a month? These are the things that I think are relevant as we think about optimization of our endpoints going forward. Dr. Fumiko Chino: Patient-reported outcomes has entered the chat. I love it. Now, Stacey, do you have anything to add from a patient perspective? Stacey Tinianov: I absolutely do, and I think the discontinuation piece is critical. But again, I also want to add that once things get approved and are in market, it's not a digital discontinuation or continuation. We have, obviously, dose reductions that tend to be led by clinical expertise. But what we're seeing in the community, especially with some of these newer targeted therapies, is individuals medicate themselves. For instance, diarrhea, you know, fatigue, there's a lot of very, very clinical side effects, but I think diarrhea is the one I like to focus on because I don't think I've ever talked to anybody who has not experienced diarrhea. So I think there's a level of understanding and empathy there. But when we look at some of these diarrheagenic, especially in the CDK4/6 space, we have individuals who, one, because it's manageable and tolerable, are given an over-the-counter prescription for an antimotility drug, and that drug then causes another side effect, and this side effect isn't measured. This is not in the toxicity profile of a therapeutic. It's in the toxicity profile of the supportive care medication. And so what we're seeing is this incredible cascading effect of diarrhea, constipation, diarrhea, constipation, diarrhea. And so patients say, "You know what, enough is enough. I'm about to go on a vacation. I'm going to take two weeks, and I'm not going to take my meds." And whether they communicate to their doctor or not probably depends a lot on their relationship. But from a drug standpoint, with these drugs, we don't know what that does, right? And so we know that we have people not taking the therapy as it was intended and approved, and this is directly a result of the side effects. The other piece is, I think it's important to note that when we think about side effects, I think oftentimes we think about a finite period of time, but some individuals are on drugs forever. They're on it forever until it stops working. And so, if you say that, okay, fatigue is really, really a challenge, but if it's your new regular, you're never going to feel better than this, that's a really hard decision to make. The other piece is, again, I think that when we think about these grade 1 and these grade 2 side effects, we don't necessarily visualize what that actually means. And so going back to poop, because we all like talking about poop, you know, a grade 2 side effect - and one of the things you already know - is defined as four to six loose, watery stools as baseline. So one of my favorite conversations or favorite phrases or questions, I guess, is to say, “You know, just take a second. Where in your busy day would you put four to six extra loose, watery stools?” And then, you know, you're like, "Oh my gosh, that's not tolerable." So it really is just this like huge, huge, huge consideration for people, and I'm not saying that these drugs shouldn't be on the market, but what I am saying is when you publish the results of how these drugs affect individuals, that needs to be part of the conversation so it can be part of the shared decision-making. Dr. Fumiko Chino: 100%, 100%. Now, Stacey and I both just returned from ASCO 2025, where the so-called "latest and greatest" new treatments were showcased. There were at least a handful of times where I heard that X new treatment was both efficacious and tolerable without any patient perspective presented. And it's been over four years since I heard the incredible Jill Feldman speak about the importance of patient-reported outcomes, including her famous slide highlighting the difference between how you look and how you feel. Stacey, you've been in the advocacy space for over a decade. Do you think we're making any progress over time on this issue? Stacey Tinianov: I should probably lead with the fact that I am an optimist. So my answer, my answer is ‘yes’. And I mentioned earlier that I've watched the focus on words and and our language is starting to change based on the recognition that words matter. I think for the most part we don't call individuals who decide to join clinical trials, we don't call them ‘subjects’ anymore. We're recognizing them as humans. We're also...
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Park the Parking: Patient and Caregiver Perspectives on Transportation Barriers in Cancer
06/16/2025
Park the Parking: Patient and Caregiver Perspectives on Transportation Barriers in Cancer
Frustrations regarding the costs and difficulties with parking at hospitals is a common concern voiced by patients, families, and healthcare providers. Transportation barriers to receiving cancer care are incredibly common despite what appears to be relatively straightforward solutions. Dr. Chino welcomes two patient-centered health policy experts to discuss this: Dr. Arjun Gupta, MBBS, an Assistant Professor at the University of Minnesota; and Dr. Shakira Grant, MBBS, MSCR, the Founder & CEO of CROSS Global Research & Strategy. 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. Frustrations regarding the costs and difficulties with parking at hospitals are some of the most common concerns voiced by patients, families, and healthcare providers online. There is nary a topic where you'll find a more unified level of outrage. Transportation barriers to receiving cancer care are incredibly common, despite what appears to be a relatively straightforward solution—to parking costs, at least. To discuss this, I'm excited to welcome two patient-centered health policy experts as guests today. Both have published work in JCO OP about transportation barriers. Dr. Arjun Gupta, MBBS, is an assistant professor at the University of Minnesota. He is a gastrointestinal oncologist, a symptom management enthusiast, and a health services researcher. His research examines cancer care access and delivery, the cost of cancer care, and the hidden burdens imposed on and faced by people with cancer and their caregivers while receiving this care. His 2020 editorial, "," documented parking costs at the top US hospitals as a source of financial toxicity. Dr. Shakira Grant, MBBS, MSCR, is the founder and CEO of CROSS Global Research and Strategy, a boutique consultancy focused on advancing equity-centered strategic solutions to complex healthcare challenges at the local, national, and global levels. She is the former health policy advisor to the US House of Representatives Ways and Means Health Subcommittee. Prior to that, she was an assistant professor at the University of North Carolina. Her qualitative analysis was published earlier this year and is called "." Our full disclosures are available in the transcript of this episode, and we've already agreed to go by our first names for the podcast today. Arjun and Shakira, it's exciting to speak with you today. Dr. Arjun Gupta: Thank you. It's a joy to be here, Fumiko. Dr. Shakira Grant: Thank you so much for having me also. Dr. Fumiko Chino: Our specific topic today is transportation barriers to receiving optimal cancer care. This concern fits within the larger focus of addressing the social determinants of health, with the goal of improving access to high-quality cancer care for all. Research on health-related social risks and needs has proliferated in the last decade, and recent evaluations of food, housing, and transportation insecurity have expanded our knowledge on the barriers that some people face to receive care. Arjun, do you mind starting us off with just a bit of background about why these issues matter for patients? Dr. Arjun Gupta: Sure. So, just some background on social determinants of health. These are non-medical factors that are often at the community level that can have direct impacts on both health and health outcomes. So, these are all the issues that are associated with living and our daily lives: where we live, where we work, do we play, and what we play. All of these issues can, of course, impact what sort of medical conditions one might develop, but also the medical care that one might be able to receive. And we think about someone who does have access to public transportation or does have access to a private vehicle, for example, or someone who is a daily wage earner or an hourly wage earner, or someone who lives next to a toxic wasteland and is exposed to chemicals. So, all of these factors can, of course, influence our health risks. And as one can imagine, all of these social determinants of health can lead to health risks or social risks. And so, my real interest in this topic came about when I was a first-year oncology fellow. So much of our training in residency is on the inpatient side. But when we had our own continuity clinic in oncology during my first year of fellowship is when I realized the importance of parking and transportation for the first time. When a patient who was receiving FOLFOX chemotherapy for colon cancer, I asked them if they wanted to get blood work a couple of days before chemotherapy so that they wouldn't have to wait for the blood work to result on the day of chemotherapy, and they very passionately said, "Oh, of course not. I only want to come in one day because the parking costs $12, and Christmas is coming up, and I need to buy presents for my grandkids." And that really, really struck me. I remember reaching out to you, Fumiko, at that time. We were junior investigators and launching our careers in oncology on what is going on and why is this real. And I think we'd done some work parallelly to highlight how these major cancer centers were charging obscene amounts for parking, which for an individual visit may seem very small, but of course, cumulatively can be large amounts. And also the fact of the nickel-and-diming that comes in for these very, very vulnerable patients and care partners. And my interests in these transportation and parking costs and barriers have evolved since our research group has been working on time toxicity. So, over the last couple of years, this concept of the time burdens of cancer care has evolved. And initially, we were largely focusing on the amount of time spent in medical appointments. So, you go up, and it takes so long. And in qualitative interviews, patients brought up that even for simple blood draws, "I'm actually spending three, four hours out of the home." So, we actually looked at this formally because our oncology discipline didn't believe this data. They kept thinking a blood draw is 10 minutes tops; you just ask a patient to come in. At our cancer center, patients get a radio frequency ID badge when they enter the clinic. This is to track them within the cancer center. So, using that radio frequency ID badge data and the average driving time through their home zip code, we found that actually, even a simple blood draw was taking people more than 3 hours, home to home. And I actually made a couple of residents walk from the parking garage to the entrance of the cancer center and found that it was a median of 7 minutes one way. Now, remember, these are mostly young adults in their 20s, not walking in the Minnesota snow. So, you can imagine someone who's an older adult, at risk of slipping, walking much slower. So, all of this to say, these are major, major issues that patients and care partners face, and I was very excited to read Shakira's work on this topic. Dr. Fumiko Chino: I love how you walked us through the granular of the patient interaction that then drove you to research this type of study because, initially, you were trying to be very patient-centered in your approach, which is, "Let me separate the lab from the visit so we can save you some time." But what they told you was that, "Hey, it actually costs me more money, and it may not actually save me any time." And I think that dovetails really nicely into thinking about the study at hand, the most recent study. And Shakira, your study on transportation barriers really just came out, and it highlights the voice of the patients and the caregivers on the lived experience of cancer treatment. And one patient from your study specifically said that their travel to receive cancer care was not only wear and tear on the cars but wear and tear on the body as well. So that echoes what Arjun just said. And I think that quote really nicely highlights that it's the costs, it's the time, it's the stamina required to navigate the hospital. These all contribute to the burdens that our patients and their families carry. Do you mind, Shakira, giving me a brief overview about why you did this work and what you found? Dr. Shakira Grant: Sure. So, I would say to dovetail on a lot of what Arjun said, this came also what I was seeing firsthand in the clinical practice. And at the time when I was directly involved in patient care, my population was caring for older adults, primarily with multiple myeloma. My background is as a geriatric oncologist, and so by and large, that meant that most of my patients are over the age of 65. But apart from age, they're also battling other things such as disability and other chronic conditions that impact their functional ability. And so, I kept hearing stories over and over, not only from patients, but I recognized there was an integral part that is often overlooked in clinical care, and that is the voice and the role that caregivers play, especially when we're dealing with older adults who may not have the independence to drive a car themselves to get to the cancer center because it might be disability, it might be other chronic conditions that impair their ability to operate a vehicle. And they kept talking about the same issues around accessibility of the parking structures, the time it takes for them to drive from their homes, especially when they're having their chemotherapies or other cancer therapies, and that may impact them by not feeling physically well and then needing to still get to the cancer center to see a physician or to receive additional treatment. And then on top of that, similarly, I heard the concerns about parking because parking was not free at the cancer center for patients. And so, this is an hourly rate, and the longer you're there, you pay more money. And for many of these older adults, they're already on a fixed income, and so it becomes very difficult for them. Even though for someone who's working and has a nice buffer of income, they may be able to readily afford $12 or $15 to pay to park every time you come to the cancer center. But if you're on a fixed income, that becomes more difficult. And so that was one of the real driving reasons behind why I wanted to do this type of research in this particular area. Dr. Fumiko Chino: This work from your team is really an excellent example of patient-centered research and explicitly examining and prioritizing the voice of the patient and the caregiver, their experiences as an avenue to help clinicians and researchers and policymakers understand where care gaps exist and how we can be doing better. And I'd love to hear from each of you why you specifically feel like this type of research is important - I know you've already mentioned some of it - and the range of patient-centered research that you have done in the past or you hope to do in the future. What is the unique knowledge that this research allows us to gain beyond some of the standard research paradigms? Dr. Shakira Grant: I think patient-centered research is really critical, not just in helping us to set the stage as clinicians, as researchers, but it becomes important for policymakers because oftentimes, we hear the stories, and the stories are the things that are most powerful. They speak to the emotional need of people, and that in itself can be very powerful, especially when you're trying to interact with policymakers about why this particular issue is important. It is easier to do that when you have a story, when you can put a face to what is actually happening. So, it doesn't seem as abstract if we're just talking about quantitative data where we're analyzing and putting out a lot of statistics. We're talking about this patient, their caregiver, their lived experience. These are the real barriers. So, I really appreciate doing patient-centered research because it centers the voices, the lived experiences, and that just enriches the experience, and it also gives that emotional and psychological appeal that is sometimes necessary to get the attention of policymakers and other legislators. Dr. Arjun Gupta: Absolutely. And to follow up on that, I think Shakira's point about telling stories is very important, especially these days. We've seen so much misinformation. And I think for me personally, as a researcher, learning how to do mixed-methods work, especially qualitative work, to be able to integrate stories into all of these quantitative data elements that we have is extremely important. To that point, I will say that when starting to research parking costs, the most impactful blog that I read on this topic was about parents whose newborns were in the neonatal ICU or the NICU. And it was such a beautifully written blog, asking someone to imagine their biological child in the neonatal ICU. And if the child had two parents, then each of the parents trying to balance work and coming to the NICU and having to pay parking fees twice a day. And to have to do that day after day and week after week and month after month, I think it's very important to share that part of the story and the horror along with that element of, "Okay, it cost $10 each time." And so, when I think about patient-centered research and how I best integrate my skills and interest, I think about symptom intervention trials. So, how do we make people feel physically better through things like medical cannabis and access through that? And the other big thing is exploring and intervening on the financial toxicity of care, the time toxicity of care, and the logistic toxicity of care. So, Fumiko, you've been such a champion for financial toxicity over the years. And just to go back in history a little bit, before Dr. Zafar coined the term "financial toxicity" 10-15 years ago, being bankrupt from cancer care was just something that happened. It sucks, it happens. But since then, it's been named, it's been shamed, and it's been intervened upon. And that's my hope with the time toxicity field now over the last two, three years. And the latest thing that our group has sort of worked on while studying time toxicity is that it's not just the time outside the home, but it's also all the paperwork and administrative burden that goes along with it. And so, our team is currently trying to provide patients with proactive legal support to actually help with medical debt, insurance denials, things like that. Dr. Fumiko Chino: I like that full scope of the patient experience when thinking about cancer care. And one thing that struck me when I thought about these studies about parking costs is that when we see someone in our clinic, you know, when we open the door and we say, "Hello," they've already had to deal with all of these transportation barriers. They've had to navigate the parking deck and walk over. And so, when we're seeing them, they've already had some amount of small trauma, sometimes large trauma, related to just trying to get in the door. And I think that really nicely encapsulates the fact that there is a larger picture that our patients are experiencing that is not just me talking to my patient and outlining a treatment plan. And one thing I think I heard kind of from both of you is that with these patient stories, you actually get ideas for research that you may not have actually thought of on your own. Again, your patient saying that they couldn't afford Christmas presents is such a compelling anchor for why what we do matters. And when we think about trying to explore things like quality of life or frailty, or the fact that, for example, the cost of a walker may actually be outside of someone's ability to pay, and they can't even afford their durable medical equipment. These are all part of the larger care experience for a lot of our patients. Now, one aspect about this most recent JCO OP study that I particularly loved was the inclusion of the caregiver as an essential member of the healthcare team. Selfishly, perhaps, as a prior cancer caregiver myself, now a cancer widow, I find the caregiver voice to be really underappreciated and understudied. Shakira, do you mind sharing why you felt like this was really important to include caregivers on this study? Dr. Shakira Grant: Sure. So, it came exactly out of the reason that you mentioned. Oftentimes when we think about research, especially within the cancer space, a lot of it is centered on the patient experience. And what I've learned through clinical practice and even working in the health policy space is that cancer is a disease that not only impacts the patient but it impacts the family around them, and that bleeds into financial issues and whether or not someone experiences financial toxicity. Now, especially in the health policy world, we hear a lot about medical debt and thinking about how that then gets passed on to other family members. So, it was critical for me and our team to really think about the caregiver because we saw them as being a central part of the cancer journey or experience. We wanted to capture their voices because so often their voices, their experiences are not taken into consideration. And I think when it's coming to think about something like transportation in particular, it's key to remember that transportation is a core determinant of whether or not people are going to be able to access healthcare. And when you are older and you have disability and you're not able to operate a vehicle, that's one aspect of it. But then there's the financial piece of the transportation, which is paying for costs to uptake your vehicle, insurance costs, parking costs, and then the other costs that happen once you actually reach the cancer center. So, it was important for us to not only understand this from the patient perspective, but we do recognize, especially with older adult caregivers, they too are taking time off from work. That means lost wages potentially for them in order to drive their caregiver to the care recipient to the cancer center. And that can have a downstream impact on them. So, it's important to amplify their voices whenever we are talking about this type of patient-centered, or should I say, patient and caregiver or patient-care partner focused research. Dr. Fumiko Chino: Now, Arjun, I saw that you recently published a piece in JAMA Network Open on time toxicity that similarly had qualitative interviews of patients, caregivers, and actually also clinicians. Can you also speak to the importance of including caregivers in research? Dr. Arjun Gupta: Absolutely. Before that, just I want to acknowledge that my own clinical care has evolved over time. I think I was much more immature earlier. But in my earlier years of clinical practice, it was largely patient-focused. And over time, I saw firsthand the importance of having an engaged care partner if I wanted the patient to do well. So, if our primary allegiance is to the patient, I initially used to look at it as, "I need the care partner to be on my side so that if we say the neutrophil count is 0.1 and we need to come to the emergency department, we need the care partner to be able to drive the patient." But over time, as I matured, the care partner became a distinct human being for me. And someone put it very beautifully that the care partner's suffering, unfortunately, often lives on even after the patient's death. And in my clinical space, which is often advanced GI cancers, that's not uncommon when the median survival for the patient may be one year or so on average. And so that's where this was motivated from. And when looking at time burdens faced by patients and their loved ones, a couple of themes came up prominently. Patients often brought up themselves that, "You know, my time is precious and so much of it is used up, but...
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Pregnancy and Breast Cancer
05/19/2025
Pregnancy and Breast Cancer
Dr. Chino talks with Dr. Erin Roesch and patient advocate Julia Maues about pregnancy associated cancer with a focus on breast cancer, the most common cancer diagnosed during pregnancy. This discussion is based off an JCO OP review article published in late 2024 called “Multidisciplinary Management of Pregnancy-Associated Breast Cancer.” Transcript Dr. Fumiko Chino:Hello and welcome to Put Into Practice, the podcast for the 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. The incidence of early-onset cancer—new cancers in adults under the age of 50—is rising by 1% to 2% annually. Young women appear to be at particular risk, with cancer incident rates over 80% higher than similarly aged male counterparts. Collectively, that means that more patients are being diagnosed with cancer during their childbearing years. Pregnancy-associated cancer occurs in 1 in every 1,000 to 3,000 pregnancies and refers to cancer that is diagnosed either during pregnancy or within 1 year of delivery. On today's episode, we'll be talking about pregnancy-associated cancer, with a focus on breast cancer, as it is the most common cancer diagnosed during pregnancy. This discussion will be based off of a JCO OP article published in late 2024 called “.” I'm excited to welcome both the first author of this review article and a patient advocate to the podcast today. They are both passionate about improving outcomes for people with breast cancer. Dr. Erin Roesch is an assistant professor of medicine at Cleveland Clinic Lerner College of Medicine and a medical oncologist at the Cleveland Clinic Taussig Cancer Institute specializing in the treatment of breast cancer. She is involved in clinical trials research, and some of her specific interests include the care of young women diagnosed with breast cancer, fertility in oncology patients, and women's health and survivorship. Julia Maues is a patient advocate working with researchers, clinicians, and other stakeholders to ensure research is patient-centered, innovative, accessible, and inclusive. She was working as an economist when she was diagnosed with breast cancer while pregnant in 2013. After delivering her son, she found out that cancer had already spread to her bones, liver, and brain. Julia co-founded GRASP (Guiding Researchers and Advocates to Scientific Partnerships), an organization that connects and fosters collaborations between researchers and patient advocates. She is also active within the Metastatic Breast Cancer Alliance and helped write the ASCO guideline for brain metastasis. Our full disclosures are available in the transcript of this episode, and we've already all agreed to go by our first names for the podcast today. Erin and Julia, it's really wonderful to speak to you today. Dr. Erin Roesch:Thank you. I appreciate the opportunity to be here and discuss this really important topic. Julia Maues:Thank you for having me. It's very important to include the patient voice on this topic, and unfortunately, I have a personal experience with this. Dr. Fumiko Chino:Our topic today is pregnancy-associated cancer. Erin, can you give us a quick overview of the background for pregnancy and breast cancer? I know in the recent era, breast cancer rates for those under the age of 50 have been rising faster than for other cancers, up to 1.4% per year since the mid-2000s. I'd always thought that pregnancy-associated cancer was pretty rare, and so I was really shocked to read in your paper that for women younger than 35, 1 in 6 with breast cancer are diagnosed around pregnancy. Dr. Erin Roesch:Yes. So, a cancer diagnosis during pregnancy is rare, with the incidence, as mentioned, of about 1 in 3,000 pregnancies, with pregnancy-associated breast cancer, or PABC, representing about 7% of all breast cancers diagnosed per year. Among women under the age of 45, PABC accounts for roughly about 2.5% to just over 6% of breast cancer cases. And for women less than 35 years, this rises to about 15.5%. Studies have shown a rise in PABC in recent years, and this is anticipated to continue with the trend of delayed age at childbearing. In regards to the pathophysiology of pregnancy-associated breast cancer, various hypotheses have been proposed to kind of try and shed more light on how this occurs and the driving factors for PABC. So these include hormonal changes that occur during pregnancy and lactation, immunologic changes that can lead to the immune tolerance of tumor cells, and also breast tissue involution that occurs after delivery and breastfeeding, which can lead to a proinflammatory state. In regards to risk factors, these include a positive family history, which is one of the strongest risk factors for breast cancer development, this includes pregnancy-associated breast cancer, pathogenic germline mutations—specifically BRCA1 or 2—and older maternal age at time of birth. We also know that breastfeeding has been shown to have a protective effect against breast cancer development. Dr. Fumiko Chino:So what I'm hearing from you is that just given the incidence rising in younger people and also delayed pregnancy, that this is really something that we're unfortunately going to be facing more and more frequently in our clinics and something that patients unfortunately will find that they have to face as well. Dr. Erin Roesch:Yes, yes, I think that's accurate. And just again, I think points to the importance of awareness of this particular topic. Dr. Fumiko Chino:Now, Julia, your lived experience in this space is really invaluable. Do you mind sharing it with us? Julia Maues:Yeah, of course. I was pregnant at 29, and I found a lump in my breast. I had an excellent OB-GYN and team, and they took it seriously. I think she wanted to watch it for a few weeks, but as soon as it didn't go away, she ordered an ultrasound, and that turned into a biopsy, and that turned into a cancer diagnosis. I lived near a comprehensive cancer center. I had multidisciplinary care, really excellent team, and was treated with chemotherapy during the pregnancy, which was very surprising to me and hard to accept. But they did provide me with a lot of evidence that that is the best treatment for both my baby and me. And so I did four cycles of Adriamycin-Cytoxan during the pregnancy and delivered my son at 37 weeks. He was healthy and full of hair, even though I was bald. That was very important, I think, for many reasons, but it showed visually that the placenta did its job and he was protected. After he was born, I could do scans that I couldn't do while pregnant. I had a lot of back pain and things that were thought to be pregnancy-related, or maybe they knew, and they just didn't go there because it really wouldn't have made a difference at that point, like, the treatment couldn't be any different. But I did that scan and found out that it was metastatic, and that changed the treatment that I did after the pregnancy, and instead of eventually surgery, I just stayed on systemic therapy for that long. And spoiler alert, this is 12 years later. That baby is in sixth grade and thriving. And I am very grateful for the privilege that I have to have received such excellent care and have access to the treatments that I have had, and also the luck to have had good response to treatments. Dr. Fumiko Chino:I love how you've taken your story and the successes, but also the horror and the terror, and really used it to galvanize your life in a mission to try to improve patient care for others. So I've always really thought that was phenomenal in terms of your mission and your drive. Julia Maues:Thank you. I'm very, very happy that it helps other people, but selfishly, it helps me to deal with my own difficult experience, and it's been a way to make something good out of this. Dr. Fumiko Chino:I feel very aligned with you on that in terms of my own personal story as a caregiver. It's one of the reasons why I became a physician. So I feel like you and I have a common touchstone there. And I think so many people in medicine and so many patient advocates are really trying to give back into a system to try to improve it for all because of either the ways that it helped them or the ways that they thought that it could be doing better. So thank you for sharing that with us. Now, Julia had mentioned that the staging scans were delayed until after delivery due to some appropriate safety concerns. And I certainly know that those diagnosed during pregnancy often have diagnostic delays. Erin, do you mind discussing what delays may occur in pregnancy-associated breast cancer and if there are any solutions to improve those delays? Dr. Erin Roesch:Sure. And I'd like to echo and certainly, you know, thank Julia for sharing her story. And I think as an oncologist, we learn so much from our patients, and so it's really, really important for us to understand, to be able to appreciate everything you've gone through. So I just, I really thank you for that. So in terms of, you know, the delays that we see—and I think, Julia, your story through this really kind of outlines much of what we see in terms of some of these delays and challenges related to the diagnosis and the workup of pregnant women with suspicion of breast cancer. So although the majority, about 80%, of breast cancers or breast masses, rather, detected during pregnancy will be benign, any palpable mass present for a couple of weeks or more in the breast or axillary region should really be clinically investigated, you know, as your doctor did. Additionally, any other breast changes—less common things such as an asymmetry, thickening of the skin, redness of the skin, nipple changes—those things should also be investigated, you know, as they raise clinical suspicion. Pregnancy-associated breast cancer often remains undetected in pregnant women until later stages due to potentially symptoms being masked by the physiologic breast changes during pregnancy. Studies have shown that a relatively high proportion, you know, over 80%, of pregnancy-associated breast cancers are self-palpated. We know that later stage at presentation and a delay in care can lead to an inferior prognosis or affect someone's prognosis. So I think in terms of the challenges, in terms from a diagnostic evaluation standpoint, typical imaging modalities that we use for breast cancer, we know some can have harmful effects on a growing fetus. So the evaluation should begin, as Julia mentioned, with an ultrasound. That would be the initial gold-standard diagnostic test. And then subsequently, a mammogram with abdominal shielding can and should be used to provide additional details regarding the breast mass. In terms of systemic staging, so I think again, as Julia pointed out, the traditional evaluation for metastatic breast cancer typically includes CT scans with IV contrast of the chest, abdomen, pelvis, and a bone scan or a PET scan. However, these imaging tests should be avoided during pregnancy, particularly during the first trimester, due to the harmful exposure of radiation and IV contrast to the fetus. In regards to some of the solutions, I think from a systemic staging standpoint, alternative imaging can be used. So when indicated or appropriate, things such as a chest x-ray with shielding, an ultrasound of the liver, an MRI of the spine without contrast could also be considered, again, in the appropriate setting. But I think, you know, Julia certainly highlights the challenges that we face from a diagnostic standpoint. Dr. Fumiko Chino:Julia, you had said something probably that was the most important, which is that you felt the mass and that your physician actually took it seriously. And I certainly have heard from other patients that when they were pregnant and they felt something, it was sort of just ‘pooh-poohed’, for lack of a better term, as, you know, normal changes in the breast, and it wasn't followed up to the extent that it should have. Do you have anything to add in terms of delays? I know you are certainly very active in the advocacy community, so I feel like you've probably heard every good and negative story about delays to diagnosis or care. Julia Maues:Yeah, unfortunately, we hear these stories all the time. The clogged milk duct, which may be very plausible, but needs to be investigated, right, is not always the case. And unfortunately, anecdotally, and I know you all have been part of evidence on this, women that are Black experience this at a much higher rate. And then we see younger women with doctors that just tell them that, “Women your age don't get breast cancer.” Dr. Fumiko Chino:Which is patently false, as we know, because the rates of breast cancer in younger women are rising. So I feel like we need to be standing on top of rooftops trying to make sure we're advocating for our patients and educating our colleagues about the early-onset cancer risk. Julia Maues:And I'll say one more thing that I think patients also have a wrong understanding of this statistic about pregnancy protecting from breast cancer after menopause. The only thing that translates is ‘pregnancy equals lower rate of breast cancer’, right? So that is not necessarily the case while you're pregnant or in the short years after the pregnancy. It is a statistic about postmenopausal breast cancer, which won't affect the pregnant person for many years. Dr. Fumiko Chino:Julia, this review highlights the role of the multidisciplinary team for optimal management of pregnancy-associated breast cancer. And from the article, it says, "At the time of diagnosis, multidisciplinary teams should be consulted, including breast surgery, plastic reconstructive surgery, medical oncology, radiation oncology, maternal-fetal medicine, genetics, and psychosocial services." Can you speak to who was involved with your care, including what really worked well in this incredibly stressful situation or lessons learned for what could be improved? I know you said you did have the benefit of a comprehensive cancer center and a multidisciplinary team. Julia Maues:Yes, absolutely. A team that came from many angles at this problem was very important. I did see a surgical oncologist, a radiation oncologist, a plastic surgeon, the medical oncologist, of course. And then I had two OB-GYNs, my first OB-GYN and a high-risk OB-GYN, and I did see genetic counseling. And I think after those first appointments, the surgeon and the radiation oncologist and the plastic surgeon didn't play a role. They were going to come back into my care after the pregnancy; that was the plan. But the OB-GYN, and especially the high-risk OB-GYN, was very important. And the fact that they were in touch with my medical oncology team and they were complementing each other in terms of medications and what treatment I needed, that was very important. Dr. Fumiko Chino:Erin, do you have anything to add in terms of coordinating these large teams? I know that the medical oncologist often works as sort of the quarterback in this scenario for these teams. Dr. Erin Roesch:Yes, and that's exactly how I typically describe myself to patients, is kind of as that quarterback. I think that Julia's description certainly highlights the importance of multidisciplinary care, and it's really crucial for pregnancy-associated breast cancer. And it's important to recognize that it's not a one-size-fits-all approach either, and that not all patients' needs might be the exact same. But that being said, it's helpful to have, you know, an algorithm that outlines the general steps, diagnosis, and management of our patients with pregnancy-associated breast cancer. And it's really important—it's an overwhelming time for patients and their families. So it's really, you know, essential to make sure that our patients have knowledge of and access to all of the resources that are available, you know, during their diagnosis, treatment, and in survivorship. I think that again, just stressing that multidisciplinary care from the beginning is really key. Dr. Fumiko Chino:That segues nicely into the next topic, which is: I really found the figure in your article to be particularly helpful as a flowchart for decision-making in pregnancy-associated breast cancer. How do you approach shared decision-making, patient autonomy, and informed consent with your patients when faced with some of these really heartbreaking decisions? Dr. Erin Roesch:So, you know, just as I said, it's certainly, you know, it's very individualized, but it is very helpful to have a guide that we can follow and that we can also use for educating other providers on what are modalities that are safe during pregnancy, what we have data on, where we're lacking, et cetera. So I think that when I talk with my patients in this type of situation, you know, I think open lines of communication, transparency, super important. And I think recognizing that breast cancer diagnosed during pregnancy often occurs during a time when a woman is figuring out their life plan. They could be finishing school, family planning, you know, career goals, establishing relationships, just to name a few things. So it's helpful to be aware of these things when we're counseling our patients so that we can better really appreciate, understand their goals and, as much as possible, help them achieve their goals while also effectively treating their breast cancer. So I always really, really strive to involve my patients in the decision-making regarding their care, but also advise them that I'm there to provide full support and whatever information that I can to be helpful. Dr. Fumiko Chino:I love that thing to highlight—that cancer doesn't define someone's existence, and they were a whole human being before their cancer diagnosis, and they should be a whole human being after their cancer diagnosis. And so making sure that we are talking to a person, not to a cancer diagnosis and a treatment plan. It's an individual on the other side. Now, Julia, I know that you said that your stage IV diagnosis came after you delivered. I'm sure that there was a shock and horror related to that. Do you have anything to add in terms of the multidisciplinary team or how it pivoted once you got that diagnosis? Julia Maues:I completely agree with the ‘quarterback’ name to the medical oncologist. They definitely have, even today, this role in my life, and I definitely benefited from really wonderful quarterbacks in my years. But I think another very important connection there is being able to connect to other patients with a similar experience. I did - at different times, I was able to connect to people who had just had a baby after treatment during pregnancy, or who had a child that was maybe a little bit older and they were thriving, and just knowing that that was a possibility or a likely possibility for my child, even though I was making him go through these treatments while inside me. Dr. Fumiko Chino:Now, pregnant women, human fetuses, and neonates have additional protected status under the federal government that mandates special IRB review. This means that pregnant women are often excluded from research, often without actually clear justification, even when the research really poses minimal risk. Erin, how do we improve the body of evidence to support best care for patients with pregnancy-associated breast cancer, understanding some of these concerns? Dr. Erin Roesch:Yes, so I think it is really important to utilize the research means that we do have. So an example of this could include retrospective analyses, you know, looking at registry data. We can really gain important, valuable information this way. Additionally, learning from thought leaders in this space and experts in this...
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Treatment De-escalation for Favorable Risk Breast Cancer
04/21/2025
Treatment De-escalation for Favorable Risk Breast Cancer
Dr. Chino talks with Dr. Atif Khan and Dr. Lola Fayanju about the shift in breast cancer management from reducing locoregional recurrence and improving breast cancer mortality to deintensification, shared decision making, and improved quality of life. This discussion will be based off a JCO OP editorial published in late 2024 called “Contextual Framework for Understanding Treatment De-Escalation in Patients With Breast Cancer.” 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. Breast cancer treatment has made significant strides in the past century, with the five-year survival rate rising from less than 5% in the early 20th century to around 90% in the present day. In today's episode, we'll be discussing the shift in breast cancer management from reducing local-regional recurrence and improving breast cancer mortality to deintensification, shared decision-making, and improved quality of life. This discussion will be based off of a JCO OP editorial published in late 2024 called "." I'm excited to welcome two breast cancer experts as guests today: the first author of this editorial and radiation oncologist, as well as a health services researcher and breast surgeon. They're both engaged in research to improve outcomes for breast cancer, including treatment optimization. Dr. Atif Khan, MD, MS, is a full attending breast cancer disease site leader and Service Chief in the Department of Radiation Oncology at Memorial Sloan Kettering Cancer Center. He is also on the steering committee of the Clinical Research Innovation Consortium, as well as on the Research Council at MSK. Dr. Khan is the chair of the breast section of oral examiners for the American Board of Radiology and is active in NRG, helping develop and lead key clinical trials to optimize radiation delivery for breast cancer. Dr. Khan is also a translational science investigator of novel radiosensitizers. Dr. Oluwadamilola "Lola" Fayanju, MD, MA, MPHS, is the Helen O. Dickens Presidential Associate Professor and Chief of the Division of Breast Surgery at the Perelman School of Medicine at the University of Pennsylvania. She is also Surgical Director of the Rena Rowan Breast Center at the Abramson Cancer Center, Program Director for Implementation Innovation at the Penn Center for Cancer Care Innovation, and a Senior Fellow at the Leonard Davis Institute of Health Economics at Penn. Our full disclosures are available in the transcript of this episode, and we've already agreed to go by our first names for the podcast today. Atif and Lola, it's wonderful to speak to you today. Dr. Atif Khan: It's a pleasure to be here. Thank you for inviting me, Fumiko. Dr. Lola Fayanju: Yeah, thanks for having me. Dr. Fumiko Chino: The topic today is treatment de-escalation for breast cancer, loosely based on the editorial that Atif wrote in JCO OP outlining a conceptual framework, which is primarily focused on local-regional therapies, i.e., radiation and surgery for breast cancer. The concept of rightsizing treatment has really been developing over the past three decades, spearheaded by surgical de-escalation. Lola, do you mind giving me a brief overview of surgical de-escalation as you have seen it throughout history and as currently realized in your practice? Dr. Lola Fayanju: Happy to. So, you know, it's one of those things where I think increasingly we recognize that breast cancer is a heterogeneous condition that shares an anatomical space. And with that refined understanding of treating breast cancer, we're no longer using a very blunt and large hammer to deal with what is actually a constellation of nails. So originally, when people used to treat breast cancer, the idea was that you wanted to take as much tissue as possible. And this originated the Halstedian mastectomy, which was a radical mastectomy that often involved removal of not only all the breast and axillary tissue but also the pectoralis muscle, even some accessory nerves, that really left people with incredibly deformed body habitus as well as compromised function. And in part, that was not an unreasonable approach given that disease was often presenting in a locally advanced fashion. However, as we have been increasingly able to detect disease at an asymptomatic, pre-palpable state, but also as our ability to treat disease at a systemic fashion has become more effective, we've been able to move from the Halstedian mastectomy to then the modified radical mastectomy, and then ultimately to even less axillary surgery, as well as less breast surgery, such that there was the advent of the lumpectomy pioneered by Bernie Fisher in the 1980s, as well as sentinel lymph node biopsy pioneered by Armando Giuliano and Don Morton in the 1990s and early 2000s. And what this allowed us to do, again, is to achieve similar if not better outcomes, because we were again catching disease at an earlier state thanks to screening mammography, but also able to provide more personalized, less morbid care that focused on just the cancer at hand with the additional adjuvant therapy of radiation to provide comparable survival to mastectomy. What this has allowed us to do is also think about the order in which we do treatment, that is allowing people to potentially get systemic therapy first in order to convert from a more morbid procedure to a smaller, less morbid procedure. So, we've made a huge number of strides both with regards to surgery in the breast as well as surgery in the axilla, and that's been facilitated by a combination of knowing more about disease, being able to be more systemic and holistic in its treatment, and also recognizing that more is not always more. The last thing I will say is that we've also been aided not only by the adjunct radiation and systemic therapies, but also by the ability of our radiologists to localize pre-existing cancer such that we can target the area and just the area of concern, whether it's through targeted axillary dissection or through sampling a previously positive area of the breast, such that we can again be more selective in terms of the surgery people get after systemic therapy. Dr. Fumiko Chino: Thanks for that great overview, and I really love it how you have highlighted that it's all of these advances that allow us to customize the treatment to the individual. So it's not one size fits all with cancer care. We're really trying to make a customized plan and really rallying all of the modern technologies to make sure that we're rightsizing the treatments for the individual. And I think that provides a lot of benefits for patients. Atif, can you highlight some of the key steps to de-escalate radiation for breast cancer? Dr. Atif Khan: I think thematically, we're seeing a very similar sort of trend in radiotherapy. Just as a reminder, radiotherapy is a critical component of breast conservation therapy and also in the post-mastectomy context for high-risk patients. Radiation has been shown to sterilize or reduce the risk of microscopic residual, reduce the risk of local-regional recurrence, and in high-risk contexts, you know, by extension, reduce the risk of all recurrences and even improve survival, for example, in the seminal post-mastectomy radiation therapy trials. Now, we existed in a time when there was perhaps only one right way to do radiation therapy, and that's not the case now. We have many different ways that we can deliver radiation therapy. And that's important because our, as Lola said earlier, our understanding of different risk strata of breast cancer has also improved, meaning we can stratify breast cancer patients into low risk, intermediate risk, high risk, maybe even very low risk. And therefore, we can tailor the intensification of our local-regional treatments to match the background risk that may exist for that particular patient. Now, if we consider five weeks of whole breast radiation or five weeks of post-mastectomy radiation to sort of be our historic norm, we now know that we don't have to protract the course of radiation out like that. We can treat that same target volume, for example, the whole breast, with a shorter course of radiation that generally is given over three weeks. Now, I do want to pause here for one second just to clarify for everyone listening: taking five weeks of whole breast and doing that over three weeks is not necessarily a de-escalation per se, because really the same biologically effective dose is being given. It's just being given faster. So it's not really a treatment deintensification or de-escalation per se. Now, it is less disruptive to patients, it might be less, say, financially toxic, for example, in terms of like missed days of work, etc., but it's not a de-escalation with respect to the intensity of the treatment. It's just the same treatment being given shorter, but we know that it's safe to do that. In contrast, partial breast radiation is, in fact, a de-escalation because now our target volume is no longer the entire breast, rather, we're just treating a part of the breast, that part of the breast where the risk primarily is, which is in the index quadrant where that original breast cancer was. And at the, let's say, at the low end of the risk spectrum, we now have very good evidence, you know, 14,000 randomized women, demonstrating that, in fact, partial breast radiation in those contexts is just as good as whole breast radiation. And I always sort of half-joke that whenever this treatment is possible, we should use it because for a fibroblast sitting in the breast somewhere minding its own business, a day without radiation is a good day, right? So if we can spare that treatment to uninvolved normal cells, we should try to do that. And then, of course, the ultimate de-escalation is to identify patients who don't need radiation at all and just omitting radiotherapy. And really across the risk spectrum, whether it's in breast conservation or whether it's in PMRT/regional nodal radiation, we are seeing the emergence of these different types of treatments, meaning kind of like the high-risk treatment, the intermediate-risk treatment, and then at the very low end of the risk spectrum, no treatment at all. But that's sort of the practice that we're living in now, and I think it's a good one. We're making progress. Dr. Fumiko Chino: I appreciate that. The whole idea is if we can potentially omit treatment to certain areas of the body or if we can omit it completely, we're certainly doing a favor for our patients if it's not going to increase their overall risk. We had talked, I think between the two of you, about some of the benefits of potentially omitting or reducing morbidities from, for example, surgeries or comprehensive treatments. Atif, do you want to take it first? What are the actual de-escalation risks? What are we potentially putting at risk when we talk about de-escalation or deintensification? Dr. Atif Khan: Yeah, great question. I mean, I think the primary risk, which is, you know, a scary thought, is that we de-escalate or we do it too quickly or we find that, in fact, reducing the intensity of treatment leads to an increase in the recurrence risk of breast cancer. That's a very scary thought. I will say that this process of creating options, you know, treatment options, de-escalated treatment options, has been quite successful. For example, I'll open it up to Lola and you, Fumiko, but I can't really think of a clear example in which the de-escalation trial went in the wrong direction. Like, they've all sort of gone in the same direction, which is that the de-escalation or deintensification studies have generally been successful, meaning that we were able to preserve the excellent oncologic outcomes that we are used to seeing with less treatment. That's a testament to kind of how careful, you know, the scientific process is with respect to these practice-defining trials. They go through multiple levels of scientific review. It's a multidisciplinary group of individuals that's looking at this. And I would say the endeavor overall has been quite successful. Dr. Fumiko Chino: Lola, anything to add? Dr. Lola Fayanju: Yeah, I think when we're thinking about the risk of de-escalation, I would put them into three categories of risk. So, there are risks to the individual, that is, you know, we're actually de-escalating in the wrong person because we have an insufficient amount of information about whether they meet the criteria for de-escalation. There's, I think, risk to the population in terms of are there groups of people who are systematically not benefiting from the de-escalation or who should not be benefiting from de-escalation because again of an underappreciation of how disease might work in that group or because the practice patterns where those people are getting care will not be amenable to de-escalation ultimately being of a good thing for them because they're not getting the other components of care that frankly are needed for de-escalation of one modality. And then three, I think there's a risk to our collective knowledge about cancer because when we're not collecting information about what happens after six weeks of radiation or how many lymph nodes are positive, we just know a little bit less about the natural history of the disease and the natural sequelae of treatment. Again, that knowledge may be worth forgoing given the morbidity to patients and the non-benefit with regards to recurrence and survival, but it's real. It means that our retrospective reviews look different. It means our ability to have preliminary data for other types of things look different. With regards to the populations, it means that whenever we're thinking about de-escalation, we need to think hard about how to translate what we see on the podium at San Antonio or ASCO into clinical practice. And that requires, I think, more care than is often administered. Dr. Fumiko Chino: Yeah, I'll quote directly from the manuscript of the editorial that we are basing this podcast on, and it said basically, "American women ascribe a high utility to remaining without evidence of disease." And that really sticks with me in that, even though there may not be a survival benefit, an increased risk of recurrence is not without a personal, financial, and physical burden on patients, even if that difference is small, it may be meaningful for the person in front of you. Now I'll also shift focus slightly and just mention that we're primarily talking about local therapy here, but I'd be remiss to not highlight that there are gains in de-escalation for systemic therapies from, for example, RxPONDER, allowing us to safely omit adjuvant chemotherapy for many node-positive patients; B21, showing that monotherapy with radiation may be actually even better than tamoxifen monotherapy with no metastatic or survival differences; and of course, the PERSEPHONE trial that demonstrated that six months of trastuzumab was non-inferior to 12 months, although, granted, there were many caveats leading to poor adoption of this in practice. Now, Lola, I know you've already mentioned this, but there are maybe some concerns that you see about broad adoption of these practices into, for example, surgical de-escalation. Based on what I know is stark disparities in clinical trial enrollment in certain populations or in maybe even clinical trial protocol adherence, are there any specific populations that you want to highlight that might be hesitant to apply this clinical trial podium data to? Dr. Lola Fayanju: That's a great question. So, as an example, when we think about the SOUND trial, which was recently published and demonstrated that in women with early-stage breast cancer who were undergoing breast-conserving therapy and had normal axillary evaluation prior to surgery, that sentinel lymph node biopsy could be safely omitted without detriment with regards to long-term outcomes, you need to think about the context in which that preoperative ultrasound is being done. So, at different institutions, whether or not an ultrasound is routinely done, whether or not that ultrasound is done prior to biopsy, all of these things have implications for how likely you are to have a false positive after biopsy (so it's preoperative, but it's post-biopsy) and also what you're going to do about it, whether you're going to act on it, whether you're going to go ahead and proceed with sampling that node if it looks enlarged, putting something in it that means you retrieve it. If it demonstrates a small amount of cancer, potentially consigning someone to either an axillary dissection or preoperative systemic therapy that they might have forgone had you had the full picture of surgical pathology. So that's just one example of how the context in which implementation occurs is really important because you have to take into account local practice patterns and what that means with regards to how we interpret the data that was used in the trial to then implement this practice in real life. With regards to populations that need to be considered, I think in terms of centering equity, both domestically but also at a global level, thinking about, for instance, how we stage the axilla, how we map the axilla. What's the facility for lymphoscintigraphy as well as for localization of a previously positive node? So, there are many countries, many quite wealthy countries, in which use of radiocolloid is not routine, where it is primarily that people are using some type of tracer blue dye, for example, and therefore would not strictly be meeting the criteria for optimal sentinel lymph node mapping that would allow for a low false negative rate after neoadjuvant systemic therapy. In the United States, we might be in places where you have patients who are having surgery with people who don't do that much breast surgery and who are less likely to have a successful and correct yield of lymph nodes at time of sentinel node biopsy. And so, you know, these are people for whom there might be actually clinically significant disease that's being left behind if not being done by someone who has a lot of experience working with dual tracer as an opportunity to localize a preoperatively positive lymph node. So again, thinking about both the availability of materials as well as the expertise of the local practitioners means that people in less or differently resourced settings may not benefit from implementation in a way that actually leads to appropriate outcomes. Dr. Fumiko Chino: Yeah, I love it how you highlight that there's global differences, but there's also just in the US differences in capacity and skills within doing these, some of these presurgical and surgical evaluations. All three of us work at world-leading cancer centers, and I recently just transitioned from two top cancer centers in the United States, but I was actually kind of shocked about the differences even between the two major centers about how we do ultrasounds, for example. Now, Atif, I've noticed that some providers don't really feel comfortable combining the information from various de-escalation trials in practice, i.e., so for some patients that might have had sentinel lymph node biopsy omitted per SOUND, they may be less likely to actually get PBI and instead, you know, prefer to treat whole breast radiation to cover the axilla. So, in this respect, it seems like we're kind of taking like one step forward, one step back. And are we de-escalating surgery to just escalate radiation? Dr. Atif Khan: Fumiko, I agree with you. It'd be very counterproductive if we found that de-escalation in one domain was leading to escalation in another domain. I think the example you cite is a good one. If we...
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Prior Authorization: How Did We Get Here and Where Are We Going?
03/17/2025
Prior Authorization: How Did We Get Here and Where Are We Going?
Dr. Chino discusses the past, present, and future of prior authorization in cancer care with Dr. Michael Anne Kyle, a health policy expert with a research focus on utilization management and patient burdens from prior auth. TRANSCRIPT Dr. Fumiko Chino: Hello and welcome to , the podcast for the . 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 prior authorization in cancer care. Prior auth has been a recent focus of healthcare policy and reform, given rising demands seen by both providers and patients. I'm excited to welcome an expert on prior authorization to the podcast today. Dr. Michael Anne Kyle is an Assistant Professor in the Department of Medical Ethics and Health Policy at the Perelman School of Medicine at UPenn. Her work focuses on defining and measuring patient administrative burden in cancer care delivery with a focus on prior authorization and how it impacts cancer care delivery, including patient wellbeing and outcomes. She holds a Ph.D. from the Harvard Business School, an MPH from the Harvard T.H. Chan School of Public Health, and a Master's in Nursing from the UPenn. Our full disclosures are available in the transcript of this episode, and we've all already agreed to go by our first names for the podcast today. Michael Anne, it's so great to speak with you today. Dr. Michael Anne Kyle: It is so great to speak with you too, Fumiko. I'm really excited about this conversation and our shared interest in improving prior authorization. Dr. Fumiko Chino: I love it that you've taken time out of your day to talk to me. To start us off, can you tell us a little bit about yourself and your career? How did you transition from being a nurse into a health policy researcher? Did you always plan on a career in research or was there some specific event or transition that put you on this path? Dr. Michael Anne Kyle: There was not. And so for anyone who's listening, who isn't sure what they want to do, I guess I have a good story to show that you actually don't need to know in advance. I started out as a critical care nurse and I still actually work as a critical care nurse. But as I think anyone who is a clinician who's listening to this knows, when you work in the healthcare system you just see so many things that could be different, that could be better. You notice the ways that the systems like really aren't set up for us to do our work or to take great care of our patients some of the time. And so that's really what sparked my interest in policy and in research. So I had really no background. After working in a hospital, high acuity critical care, a lot of oncology, I spent several years working in community-based programs in New Jersey and this is before the Affordable Care Act. We were focused on access to medication, trying to get people more access to Medicaid, and did work around the initial rollout of the Affordable Care Act. And that experience where I spent a lot of time helping people enroll in social programs really gave me like some of the first insights into how much paperwork and how much time and how tedious it is to figure a lot of this out, even if you had someone helping you it’s still challenging. And that sort of stayed in the back of my mind as I went to grad school. And really what got me interested in like all the non-medical side of patient care is just like my friends and my family talking to me about it. And I think it's something we all just experience in our lives, but there just wasn't a ton of research. And so I've really been motivated to try to put some, like, numbers and evidence beside all these experiences that we know very deeply. Dr. Fumiko Chino: So what I'm hearing is that you learned yourself by doing the work, how difficult the work was to actually obtain services for your patients, and so you decided you needed to go upstream to try to address some of the policies that were fundamentally broken, causing these horrible situations for your patients. Dr. Michael Anne Kyle: So well said. Yes. Dr. Fumiko Chino: Now, I heard that you just moved from Boston to Philly. How's that transition going? Dr. Michael Anne Kyle: It's great, it's great. Many of the same familiar faces and also exciting to meet new people, learn new things, try new restaurants. So yeah, overall I feel very lucky. Dr. Fumiko Chino: Well, with that background, we need to dive into our actual topic, which is prior authorization. It's unlikely that anyone listening to this podcast has not encountered prior authorization in their practice or due to interactions with insurance for themselves or for their family members. Can you give me a quick overview about prior authorization? What it is, what it is not, how did we get here? Dr. Michael Anne Kyle: Oh, so every healthcare system needs some sort of coverage policy. What services are we going to cover and at what cost? And there's many ways to do this. There are countries that sort of set this up nationally. Here in the US, we do not do that. We do it prescription by prescription, and that's how we end up with prior authorization. So basically, prior authorization is a request you submit to get approval for coverage for a drug or a service that you want to give your patient. And so you may need to submit, and again, I'm sure everyone listening knows this well, but it can range for something very quick like, “Yes, this person has like the genetic target for this drug. Check, they can have it,” or it can be a more complex, protracted exchange. That is the sort of intellectual side of this. And I want to separate that from like the actual decision making from the other huge piece of prior authorization, which is how we operate it. And that is the bureaucracy and the fax machines and the time on hold, which has a separate bucket of problems. And so I just want to sort of carve out those two categories when I think about prior auth and what we need to do. Dr. Fumiko Chino: One thing I always try to say is that even with prior authorization, even when it is working as functions, it is itself not a guarantee that a claim is even going to be approved. You can obtain prior authorization and then still face a denial for the actual claim, which is even more frustrating. And I think this kind of cumulative burden of suffering seems to me to be at an all-time peak. So can you give me a little bit of background about how the US healthcare system evolved to include prior authorization? Like why does this really even exist? Dr. Michael Anne Kyle: Great question, and you'll get a different answer depending on who you ask. But overall, we need as a society to make a decision about the services that we are going to provide to one another. There's many different elements to that decision. One of the challenges in the United States is that we have little to no policy around cost. So when our healthcare can cost an unlimited amount, that makes it higher stakes and a trade-off is that there can be other restrictions on access. So we really don't have any constraints on cost in the U.S. other than administrative tools like prior authorization. And so that leads us to use it, I think, in ways it wasn't designed for, because there is a clinical use of prior authorization that's very appropriate, that we are doing complex things with patients that may or may not be a good fit, and we really want to figure out if this is the right match. That is separate from healthcare is very expensive and unaffordable and we have no way to try and solve that problem except to try and put more restrictions in place, like making people go through a bunch of approvals and either discouraging them from going through that process or, you know, causing attrition through the process. So I think one big element to how did we get here has to do with healthcare being very expensive and I think that dominates our minds. And I think there are other rationales for prior authorization that are very appropriate. But I think to your point, it's hard right now to see the times where it makes sense to go through this review process because so often you're experiencing prior authorization for treatments and medications where it just doesn't make any sense. Dr. Fumiko Chino: One thing I've heard you speak before about is the Medicare Part D protected status that requires coverage for all or substantially all of drugs in the anti-cancer therapy treatment. Do you mind speaking a little bit about how that affects utilization management? Dr. Michael Anne Kyle: Yes, great point. So one of like the most strictest restrictions you could put is exclusion - so you could just not cover a drug or a service. And we often don't think of that as a coverage restriction, but of course it is. But as you said, there are certain types of treatments and services where we have put in place policies to prevent exclusions because we thought these were important treatments and we didn't want them to be excluded from coverage. And in the Medicare program in Part D, which is the outpatient drug benefit, there are several categories of medications that are protected classes, and one of them is oncology drugs. So that means oncology drugs cannot be excluded from the Medicare Part D program unless there's a substitute. Like for example, if the drug goes generic, you could just cover the generic, but otherwise you have to cover everything. So that means that the only mechanism available to try and influence decision making and influence utilization is prior authorization. And that, I think, contributes to why we see such tremendously high rates of prior auth in oncology drugs in particular. Dr. Fumiko Chino: So you're saying that a policy that was put in place in theory to help protect people with cancer may actually be placing disproportionate burden on them? Dr. Michael Anne Kyle: Yes. Dr. Fumiko Chino: Ironic. Dr. Michael Anne Kyle: Yes. Dr. Fumiko Chino: Virtually all patients and providers that I have talked to have felt like prior authorization has gotten worse in the last five years. Is this just a feeling or an emotion or does the data support that we're dealing with higher prior auth burdens more than ever before? Dr. Michael Anne Kyle: Yes. So I think one reason prior authorization has come to the forefront of people's attention is because the prevalence is increasing. The reason for that seems largely to be driven by some larger changes in coverage, notably increase in managed care. So most of the Medicaid program is now in Medicaid managed care. In Medicare for older adults, Medicare Advantage is now a huge proportion of that program. So as managed care coverage becomes more prevalent, with that comes more utilization management tools. So then you face it more and more in your clinical practice and for your patients. So that's one major driver. And then the other thing is that as the cost of drugs goes up, so does the effort to contain costs. Dr. Fumiko Chino: The downward pressure for cost management. Dr. Michael Anne Kyle: Exactly. Dr. Fumiko Chino: Now, you said managed care. And I just want to clarify for our audience, when you say manage Medicare or managed Medicaid, what do you mean? Dr. Michael Anne Kyle: Thank you for reminding me to clarify. So in the sort of classic Medicaid or Medicare programs, or how insurance used to be when those programs first started in the 1960s, is, you know, you would like get your insurance card and you can just go around to anyone who takes that insurance. Managed care is just like a more active type of insurance where you'll have like a defined network - these are the doctors who are in your plan that you can go see, otherwise, you have to go out of network or these are the services that are covered, or these are the drugs that are covered. So managed care basically means the insurance company is taking a much more active role in the design of the benefit and so then that's why you'll see more utilization management. Dr. Fumiko Chino: So instead of, for example, straight state Medicaid, which would be a state provided, federally funded plan, it's a private company who's actually providing those services through a contract through the state. Dr. Michael Anne Kyle: Yeah. Dr. Fumiko Chino: And similarly for Medicare Advantage plans, it's a private company who has decided to take the money from the federal government and then ends up providing your health care as someone who's over 65 who signed up for an MA plan. Dr. Michael Anne Kyle: Yes. And there's two reasons that contracting ends up happening. One is that it's easier for budgeting purposes for the state, just kind of like issuing a contract. But the other thing is that states don't have the capacity to administer complex benefits. And so there aren't really like people to implement prior authorization or this type of complexity, like in the government itself. And so that's why we tend to see these kinds of practices more in insurance companies. Dr. Fumiko Chino: Yeah, I was shocked. You know, one of the great wins of the, for example, Affordable Care Act was expansion of Medicaid, which seems great, you know, to provide health insurance to more people. But then along with that came the rise of the managed Medicaid programs, which is essentially, it sounds like states kind of got overwhelmed and could no longer manage their patients on Medicaid. Does that seem accurate? Dr. Michael Anne Kyle: I think there's a couple of things. So one, this is the time period when I was still working in a lot of like, on the ground Medicaid public health work. So Medicaid expansion happens like still kind of in the aftermath of the Great Recession. So there had been tremendous layoffs in like, reductions in state capacity, while at the same time there was this huge expansion and like their scope of work. And so I think like a lot of the reason that managed care arose was that like they're just, you know, there had been these huge layoffs and there weren't people left in the Department of Health or in the Medicaid office. And so it was necessary to bring in external partners because the government had been understaffed. Dr. Fumiko Chino: It's such a good point. I actually love this little bit of history you taught me because I'm always trying to tie the red thread to the red thread. Like this policy led to this either benefit or deficit. And I think, you know, stepping back one click further to say this was the environment in which these policies were enacted is so helpful when we put these things in context. It has like the benefit of talking with someone who's really a policy expert, that really helps me understand these things better. Now, most of the data on prioritization has been really physician survey data. It shows that we hate it, it wastes our time, it increases staff allocation, it causes endless frustrations for us. Now, your work has mostly been focused on the burden on patients. Can you share what research has shown about this? Dr. Michael Anne Kyle: I decided to focus on patients because there was just no evidence. And so there's not a ton, but there is some evidence about the experience of physicians, and everything you said is spot on. But my work finds that like you think that the pie is just what the physicians are dealing with or what the health system is dealing with, but actually like the pie is even bigger because there's this whole other chunk of work that patients are doing that we haven't really accounted for. Because of course you are spending your time after hours on hold, doing peer to peers, but at the same time, like letters are getting sent to the patient's house and they're trying to figure out what does this mean and they're also making phone calls, trying to understand what happened. So I started this work with a national survey of adults 18 to 64 who are insured. This is just like people off the street, like not necessarily any particular health issues. And 1 in 4 people said they had delayed or foregone care in the past 12 months due to an administrative barrier. And one of those barriers was prior authorization that patients reported. And the structure of that question is the same as the way we ask questions about access barriers related to cost. And so the magnitude of barriers related to these administrative burdens is about the same as the barriers that people are reporting related to cost. And I think that's really important because we all have this sense that it's a hassle or a problem. I think it's only recently that we're understanding that it's not just frustrating, that it actually really does affect access. So that was like one step. Then I have another piece of work building on that where I thought, okay, so patients are reporting that this is a problem and candidly that's sufficient because they're stressed and they don't feel well. But I looked at oral anti-cancer drugs and said, “Okay, like can we observe in data this phenomenon that patients are reporting that they're having issues with delayed and foregone care?” One of the challenges with claims data is you only see the claims that got billed. So we can't even see the people who got a prescription and never filled it. And I'm sure that you have many personal experiences of that with your patients and so do many of the people listening. But I'm not even able to see that in claims. So I just looked at people who were already taking a medication, already taking an oral anti-cancer medication. So we think, “Okay, they're consistently filling it so we know they're like on this regimen, and then their plan introduces a new prior auth policy on that drug and what happens to them?” And we find that people do experience delays in foregone care, that people with a new prior auth introduced on this drug they were taking have an average of a seven-day delay in their next fill after the prior auth, and that they have about seven times the odds of never filling that again. And this is for people, remember they're already taking this medication, which means they're connected to care, they have a doctor who's following them and there are policies saying in Medicare, and so this is in the Medicare population and there are Medicare policies which say, you know, you're supposed to just like roll people into coverage. If they already are on this medication and there's a prior auth, you're just supposed to continue and not impose a new prior auth on them. And that may be true, but in practice that policy isn't working because there's a delay of some kind. We don't really know what's happening in that time. We just know there's a disruption. And whether it's because they have to do a prior auth anyway or they found out they didn't need a prior auth, the point is like there's an administrative barrier that's arising for people who are then not taking their imatinibs, not taking their erlotinibs, not taking their abiraterone. So like it's really concerning and that does not get us to health effects. One of the challenges in studying health effects is that the sample sizes get smaller and smaller and it's hard to attribute outcomes, especially for people with complex illnesses, to like one particular event or one particular cause. So that's something that sort of remains on my bucket list and hopefully on other researchers' bucket lists. But I think that you as a physician and the other people listening get a contextual sense that these are drugs that you really shouldn't be going off without, like a planned clinical reason. Dr. Fumiko Chino: You know, the research that you just discussed was published last year in , and I remember when I was talking to you about the study that you said something along the lines of you couldn't do an updated analysis now because this was a plan that didn't have a prior auth, that now...
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Optimizing the Electronic Health Record for Patient-Centered Cancer Care
02/17/2025
Optimizing the Electronic Health Record for Patient-Centered Cancer Care
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, “,” on which Dr. Singh served as the lead author. TRANSCRIPT Dr. Fumiko Chino: Hello and welcome to , the podcast for . I'm , 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 article published in late 2024 called, “.” 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,...
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Debt or Dying: The JCO OP Financial Toxicity Special Issue
01/20/2025
Debt or Dying: The JCO OP Financial Toxicity Special Issue
Host Dr. Fumiko Chino sits down with co-editor and health outcomes researcher Dr. Ryan Nipp, and contributing author Dr. Kelly Shanahan who is living with metastatic breast cancer to have a candid conversation about financial toxicity, the lived experience for patients, and what we can do to move the needle on affordability in cancer care. TRANSCRIPT The disclosures for guests on this podcast can be found in the show notes. Dr. Fumiko Chino: Hello and welcome to the inaugural episode of , the podcast for . I'm , an Assistant Professor in Radiation Oncology at MD Anderson Cancer Center with a research focus on access, affordability, and equity. In today's episode, we'll be highlighting the special issue of focused on financial toxicity. I'm delighted to serve as an editor for this special issue, and I'm overjoyed to welcome two guests who were instrumental in creating the issue. The first is my co-editor, Dr. Ryan Nipp. He's a Medical Oncologist focused on GI cancers at the University of Oklahoma Stephenson Cancer Center, where he also does cancer outcomes research. I'm also pleased to welcome Dr. Kelly Shanahan, who is an author of a narrative piece for this issue. Dr. Shanahan was a practicing OB/GYN in Lake Tahoe, California when she was diagnosed with stage 2B breast cancer in 2008. She has now been living with metastatic breast cancer since 2013 and serves as a patient advocate and research advisor. Our full disclosures are available in the transcript for this episode and we're all already agreed to call ourselves by our first names for the podcast today. Kelly and Ryan, so great to speak with you today. Dr. Kelly Shanahan: Likewise, Fumiko. Dr. Ryan Nipp: Thank you so much. Dr. Fumiko Chino: To start us off, I'd love to just set the scene about financial toxicity, our topic. Ryan, do you mind sharing an overview of financial toxicity, what it is, what it isn't, and how you got involved in this type of research? Dr. Ryan Nipp: Absolutely. Thank you. So I always start with the idea that the NCI website, I remember when this came out a few years ago, they provide some helpful information on this topic. The definition that they provide I think works nicely. It states that financial toxicity describes the issues patients may have related to the cost of medical care. The high cost of medical care, in addition to the cost for missed work, loss of employment and travel and lodging for care, can cause financial problems and may lead to debt and bankruptcy. Financial toxicity can also affect a patient's quality of life and access to medical care. For example, a patient may not take a prescription medicine or may avoid going to the doctor to save money. Research also suggests that patients with cancer are at risk for experiencing financial toxicity potentially greater than people without cancer or other medical issues. Financial toxicity is also sometimes called financial burden, financial hardship, financial distress, financial stress, economic burden, and economic hardship. So it goes by a lot of different names. Throughout my career and my research to date, I developed an interest in financial toxicity as I'm particularly interested in improving care delivery and outcomes for patients impacted by cancer and this continually became an issue as I was growing and training in oncology, noticing that the financial toll of having a cancer diagnosis can be remarkably problematic and concerning for our patients. Thus, I wanted to find ways to study this issue and ultimately develop strategies to address the problem. So just to give a little bit of background on the current , we wanted to do this special issue for numerous reasons. We're fortunate to work at JCO OP or work with JCO OP, JCO Oncology Practice which has a unique interest in this topic. We've been working to address this issue of financial toxicity throughout our careers, I say me and Fumiko, and we felt that the current time represented a unique opportunity to take a look back and see what progress has been made, also, what problems are persisting. We are extremely proud of this special series as we've had numerous unique viewpoints captured and I think this series provides a relatively comprehensive overview of the current state of the science in this field related to financial toxicity and oncology. And looking back over our notes over the past couple of years, while we were planning this issue back in the summer of 2023, we had wanted to have a broad array of articles specifically focusing on the state of the science of financial toxicity, understanding the health insurance landscape, health policy issues related to this, cost of care discussions, social determinants of health, financial assistance programs, and financial navigations. We also wanted some unique perspectives on financial toxicity with regards to geriatric oncology, a global and international perspective, and we wanted to have as many articles as we can relate to the patient perspectives on this topic, which we’ve got very fortunate for. Specifically we wanted one to give an overview of the foundational work in this field. Number two, highlight knowledge gaps that still exist. And number three, compel the field forward to encourage interventions and innovations necessary to move oncology into a more equitable and affordable space. We are blessed to have so many phenomenal colleagues that were willing and able to share their experiences, expertise and insights for this special issue. So thank you. It was a long winded answer, but I'll stop there. Dr. Fumiko Chino: I Love it. I 100% agree with you. I feel so blessed to have worked on this issue and it really is sort of where we are now, how did we get here, and what the future should hold, how can we be doing better for financial toxicity. Now, Kelly, your piece was a real highlight of the issue for me. Do you mind speaking on the lived experience of financial toxicity and how costs have really unfortunately driven some of your treatment decisions and your options? Dr. Kelly Shanahan: Yeah, thank you Fumiko. Thank you, number one, for inviting me to contribute to this issue and for your kind words about my piece. I come from a place of privilege. I was a physician when I was diagnosed, but both with early stage and metastatic cancer. Yet I still suffered significant financial impacts. When I was early stage, I had the option, obviously, of either a lumpectomy with subsequent radiation therapy or a mastectomy. Well, I live at Lake Tahoe where we have zero oncology services at my end of the lake. And so for me to have a lumpectomy, I would have to drive 45 minutes to an hour each way, five days a week for radiation therapy, for, at that time, five to seven weeks. We didn't have accelerated courses of radiation back in 2008. I had a then nine-year-old and I was in solo private practice. So if I had chosen radiation therapy, that would have been time away from my practice, loss of income, having to make sure my husband or somebody else could pick up my daughter. So I chose to have a mastectomy and that was my primary reason for choosing that type of surgery. Then five years later when I was diagnosed with metastatic breast cancer, again, no oncology services in my town, except for someone I was ironically subletting my office to one day a week who recommended combination IV chemo, hoping to get me closer to the starting line so I could perhaps live longer. My daughter at that time was in 10th grade, a sophomore in high school, and I would have done absolutely anything to try to make it to her high school graduation. So I did the chemo which included a taxane, which left me with permanent chemotherapy induced peripheral neuropathy. Now, it's a little challenging to be an OB/GYN with numb fingers because I know I wouldn't want somebody trying to catch my baby or wielding a very sharp scalpel over my anesthetized body who had trouble feeling their fingers. So I had to stop practicing medicine, which was a huge, huge impact. I will remain eternally grateful to the men I started in practice with way back in 1991 when I finished residency for insisting that I get a disability policy because that is the only reason that my family did not have to declare bankruptcy was the fact that I had a long term disability policy. But it still made a lot of impacts on things we chose to do. I remember I was diagnosed prior to the advent of CDK4/6 inhibitors and I was diagnosed early stage, prior to the advent of the Affordable Care Act, which was a whole other thing. But I remember thinking, “Oh, my gosh. If I have to go on a CDK4/6 inhibitor that's going to cost $15,000 a month, I'm going to have to pay a 20% co-pay.” And that's a choice between putting that towards my daughter's college education. I would have chosen not to take that medication. Those are huge things, and that seems cheap. Now, I am currently on a medication that was approved a year ago that is $28,000 a month. Fortunately, I have Medicare due to disability. I'm still not quite old enough for Medicare, that covers my expenses. I met that $3,400 medication deductible within the first month of being on that medication. But that has eased the financial burden. I also chose to participate in a clinical trial last year when my cancer progressed. And I live in a ski resort town 200 miles away from a major academic medical center. So it was 200 miles each way to participate in this clinical trial. And again, I had the wherewithal to be able to put a hotel or an Airbnb on my credit card, to pay for the gas and then wait for reimbursement. Not everybody can do that. We wonder why we can't accrue to clinical trials. We wonder why we don't have the diversity that we want. Well, these sorts of financial issues are part of the reason. Dr. Fumiko Chino: Thank you so much for that overview of what you've had to deal with during the course of your disease treatment and that realization that, ‘oh, this is with privilege’ that I know what struck a chord with me as a cancer caregiver. I was brought into the field of financial toxicity as being the primary caregiver of my husband. He was diagnosed with cancer, again before the Affordable Care Act, and we had these caps on his health insurance payouts. And so we ran up against his lifetime payout cap and essentially had to pay everything out of pocket after that. And even just for people with long disease courses or who were treated before the Affordable Care Act, they've seen a huge sea change in terms of financial toxicity. But sadly, the Affordable Care Act hasn't made actual cancer care necessarily more affordable as we continue to produce more effective treatments, but they come at these great expenses. And I think we are now at, I would say a liminal point where we're at accelerating drug discovery and also accelerating costs. One of the reviews in this special issue focuses on the social and legal needs. Things like housing or food insecurity, transportation barriers, unemployment and psychosocial needs. They have a bidirectional impact on financial toxicity. And Dr. Hussaini and his team really put together a nice overview on this topic for the issue. Kelly, I know you've already spoken a little bit about this, about the transportation barriers, about the difficulties being unemployed. Again, coming from that position of privilege, can you talk about how hard it's been to even just navigate the healthcare system even with your incredible knowledge base as a physician expanding on what was hard for you, if it might have been harder for other people within the larger community of people with metastatic disease? Dr. Kelly Shanahan: Yeah, I mean, I'm a physician and I know the healthcare system and I had a hard time figuring things out. And some of this, I realize now, when I was a practicing physician, I didn't know what things cost because what things cost depends on what your insurance is. And that's true of the cost of an office visit, of a procedure and of medications. That was challenging as a patient knowing who to call to find out to get a patient assistance program. And then when you have Medicare, again, whether it's because of age or because of disability, you hear all these things about, “Call company X if you need financial support for our great drug,” but that's not accessible if you have a federally funded insurance. So I think that was really challenging to figure that out. Fortunately, a great clinical pharmacist at UCSF really helped me with that process. And I think that's something that we don't realize as patients is there are other resources. Our doctors don't know all the nuances of the financial aspects. If you are being treated at a larger academic medical center, there should be a financial navigator. But considering the fact that most people with cancer are treated in the community, and especially if you're treated in a private practice versus one that might be affiliated, let's say with a community hospital, they may not have an oncology social worker, they may not have a navigator. And I really wish there were more programs available like the one at Levine Cancer Institute that has a financial navigation program, a multidisciplinary program to help patients. There are a lot of resources available to patients. I am on the board of directors of METAvivor. Our primary focus is raising money for metastatic focused research. We fund research, but we also offer resources that we can connect people with on our website, connect them to places where patients can get financial help. There is a fabulous organization, the Lazarex Foundation, which used to provide financial support to help people do a clinical trial, support for housing, support for transportation. And I know their funds are limited and that has sort of gone by the wayside, and that's really unfortunate because we want more people to participate in trials. And I think we have to move away from this, “Oh, yeah. We, the pharmaceutical industry, the sponsor of the clinical trial. We’ll reimburse you.” Number one, they do not tell you that upfront. I knew that. I know that from the relationships I have with some people in the FDA. I know that that is allowed. So I specifically asked about that. But most patients don't know that. And I think any patients that might listen to this, if you're contemplating a clinical trial, upfront say, “I know that reimbursement for my travel related expenses and trial related expenses are allowable under FDA guidance. So how are we going to do that?” But I also think that this needs to be not retrospective, not a reimbursement, but for a lot of people it needs to be an upfront payment. Even things like to cover the Uber for them to get from where they live on one side of a major city to the cancer center on the other side. So we need to do that. And recently, at the San Antonio Breast Cancer Symposium, in a session for advocates with the FDA, I asked that question: Does the FDA preclude payments before the fact? Do you consider that inducement? And the answer was “No”. There's no rule that says you can't do that. So again, we as patients need to be educated that there are resources available to us and don't take ‘no’ for an answer. Dr. Fumiko Chino: I love all that information. And I know certainly when I was a caregiver, when my husband was sick, we had evaluated all the clinical trial options and found one that was potentially an option for him in California. But the travel expenses were too great for us to overcome the upfront cost because at that time he was out of work, I was out of work, we were both out of work, we had no income coming in. And so those travel expense barriers were one of the main reasons why it was a non-starter to even think about the clinical trial enrollment for him. It's just depressing to think that that could have made a difference. But I know that clinical trials work. That's how we discover new treatments. Dr. Kelly Shanahan: Yeah, and the more people that participate and the more diverse a population– If the only people doing clinical trials are old white women, then how do we know it's going to work for young black women and men or other ethnic groups? We need diversity so that we know how the drugs work, what side effects they have in diverse populations. Dr. Fumiko Chino: Now, Ryan, I want to pull you into this. What have you found can be helpful to help assist patients who may be struggling with their social or legal needs or even just having difficulties making ends meet? Dr. Ryan Nipp: Yeah, Kelly, I had worked in the past too with Lazarex Foundation and found them to be phenomenal and the opportunity to get more patients onto clinical trials was a no-brainer and such a valuable resource. So I think for this question, I do love this question, I think it depends as Kelly was kind of hinting at too. It depends on insurance, depends on the person, depends on the specific needs. But again in thinking about this, I think there's some growing evidence supporting things like financial navigation. Like you said Kelly, not every place has it. I'm actually very fortunate now at our cancer center in Oklahoma, we do have financial navigators and I always thought that was extremely forward thinking for them. We also have great social work assistance, knowing that that's a limited resource, but we have amazing social workers which I often sometimes get their expertise and help for this. There's some research out there showing that financial assistance with things like travel, lodging and co-pays could be beneficial for our patients. Again, trying to find those resources and is it sustainable? That is a tough question. We also have an article in this special series focused on financial assistance programs by Dr. Raghavan which is phenomenal. It's an editorial on this topic I would encourage people to look into when this comes out. I've also just lastly admired recent work that shows that there's an intervention that, I think, I'm not quite remembering where it was tested, but it's a financial hardship screening intervention where they were asking people about financial hardship and then over time were able to find that by just asking and then bringing in whatever resources might be available, this could address the issue of financial toxicity in that study and it was an extremely impressive compelling outcome with that kind of a model. What I think is the future is that we need to continue to see those types of models put into routine practice and how can we actually implement those in our day to day practice. But that to me was very promising when that came out in recent years. Dr. Fumiko Chino: Absolutely. I think you're referring to Dr. Blinder's piece in JCO from last year. Dr. Ryan Nipp: Yes. Dr. Fumiko Chino: Dr. Blinder was one of my amazing colleagues at MSK before I transitioned down to Texas. Dr. Kelly Shanahan: Yeah, and Dr. Blinder is working on a new proposal. I am one of the advocates on that proposal again about the financial screening. And again, just even asking the question can make a difference. Dr. Ryan Nipp: Yup. Dr. Fumiko Chino: Absolutely. I know you both kind of pointed out that there are limited resources, but this idea that it's sort of depressing that someone who might be in need will not actually get the assistance from their physician or their physician team or their cancer center, but they'll have to reach out to other patients, and I'm so glad that that information is being shared. But it seems like we could be doing better. More orderly assistance, more navigation, more direct help to patients who actually need it in the way that they need it because it's not one size fits...
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Oncologic Services Through Project Access and Other Safety Net Care Coordination Programs
11/23/2020
Oncologic Services Through Project Access and Other Safety Net Care Coordination Programs
Dr. Pennell and Dr. James Hammock discuss the provision of oncologic services by Project Access safety net care coordination programs.
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COVID-19 Related Ethics Consultations at a Cancer Center in New York City: A Content Review of Ethics Consultations during the Early Stages of the Pandemic
11/23/2020
COVID-19 Related Ethics Consultations at a Cancer Center in New York City: A Content Review of Ethics Consultations during the Early Stages of the Pandemic
Dr. Pennell and Dr. Friedman discuss the variety of ethical dilemmas for health care providers brought on by COVID-19.
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Racial disparities in health care utilization at the end-of-life among New Jersey Medicaid beneficiaries with advanced cancer
07/06/2020
Racial disparities in health care utilization at the end-of-life among New Jersey Medicaid beneficiaries with advanced cancer
Dr. Pennell and Dr. Jennifer Tsui discuss the processes that lead to suboptimal EOL care within Medicaid populations and among racial/ethnic minority groups.
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Effect of surgical oncologist turnover on hospital volume and treatment outcomes among patients with upper gastrointestinal malignancies
06/15/2020
Effect of surgical oncologist turnover on hospital volume and treatment outcomes among patients with upper gastrointestinal malignancies
Dr. Pennell and Dr. Jan Franko discuss Dr. Franko’s article, “Effect of surgical oncologist turnover on hospital volume and treatment outcomes among patients with upper gastrointestinal malignancies”
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Gender Differences in Faculty Rank and Leadership Positions Among Hematologists and Oncologists in the United States
05/29/2020
Gender Differences in Faculty Rank and Leadership Positions Among Hematologists and Oncologists in the United States
Dr. Pennell, Dr. Khosa and Dr. Marshall discuss the recent JCO OP publication, “Gender Differences in Faculty Rank and Leadership Positions Among Hematologists and Oncologists in the United States”
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Development of an “Art of Oncology” Curriculum to Mitigate Burnout and Foster Solidarity Among Hematology/Oncology Fellows
04/09/2020
Development of an “Art of Oncology” Curriculum to Mitigate Burnout and Foster Solidarity Among Hematology/Oncology Fellows
Dr. Pennell talks with Dr. Daniel Richardson discuss physician burnout and the author’s curriculum designed to mitigate burnout and foster solidarity among fellows.
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Implementing Decision Coaching for Lung Cancer Screening in the Low-Dose CT Setting
03/02/2020
Implementing Decision Coaching for Lung Cancer Screening in the Low-Dose CT Setting
Dr. Pennell and Dr. Lisa Lowenstein discuss decision coaching in the LDCT setting and how it provides an opportunity for patients to confirm their screening decision by ensuring they are truly informed.
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Improving the Time to Activation of New Clinical Trials at a National Cancer Institute–Designated Comprehensive Cancer Center
02/05/2020
Improving the Time to Activation of New Clinical Trials at a National Cancer Institute–Designated Comprehensive Cancer Center
Dr. Nathan Pennell, Dr. Muhammed Beg and Ms. Erin Williams discuss improving the time-to-activation of new clinical trials at an NCI-Designated Comprehensive Cancer Center.
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Coverage, Financial Burden, and the Affordable Care Act for Cancer Patients
12/06/2019
Coverage, Financial Burden, and the Affordable Care Act for Cancer Patients
Dr. Nate Pennell talks with Dr. Joel Segel about “Coverage, Financial Burden, and the Affordable Care Act for Cancer Patients.”
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Determining If a Somatic Tumor Mutation Is Targetable and Options for Accessing Targeted Therapies
09/10/2019
Determining If a Somatic Tumor Mutation Is Targetable and Options for Accessing Targeted Therapies
Dr. Nate Pennell discusses "How to Know if a Somatic Tumor Mutation is Targetable" with Suanna Bruinooge, the director of research, strategy, and operations at ASCO's Center for Research and Analytics, or CENTRA, and Dr. Richard Schilsky, senior vice president and chief medical officer at ASCO.
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The Opaque Results of Federal Price Transparency Rules and State-Based Alternatives
08/15/2019
The Opaque Results of Federal Price Transparency Rules and State-Based Alternatives
Dr. Pennell and Dr. Kircher discuss the push for increased price transparency among stakeholders in an effort to control the rising costs of healthcare.
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Oncologists’ Attitudes and Practice of Addressing Diet, Physical Activity, and Weight Management With Patients With Cancer: Findings of an ASCO Survey of the Oncology Workforce
06/27/2019
Oncologists’ Attitudes and Practice of Addressing Diet, Physical Activity, and Weight Management With Patients With Cancer: Findings of an ASCO Survey of the Oncology Workforce
Dr. Nathan Pennell and Dr. Jennifer Ligibel discuss weight management and physical activity programs for patients with cancer.
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Potentially avoidable hospital readmissions in patients with advanced cancer
06/17/2019
Potentially avoidable hospital readmissions in patients with advanced cancer
Dr. Pennell talks with Dr. Patrick Conner Johnson, hematology oncology fellow at the Dana Farber Cancer Institute Massachusetts General Hospital fellowship program about his and his co-authors' new study titled "Potentially avoidable hospital readmissions in patients with advanced cancer."
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Opioids and Cancer Pain: Patients’ Needs and Access Challenges
04/24/2019
Opioids and Cancer Pain: Patients’ Needs and Access Challenges
Dr. Pennell talks with Dr. Ray Page about efforts to address the opioid crisis impact onthe care of patients, and what role oncologists can play on this issue.
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Improving Timeliness of Oncology Assessment and Cancer Treatment through Implementation of a Multidisciplinary Lung Cancer Clinic
03/25/2019
Improving Timeliness of Oncology Assessment and Cancer Treatment through Implementation of a Multidisciplinary Lung Cancer Clinic
Dr. Pennell talks with Dr. Genevieve Digby about the importance of timely care for cancer patients, and more specifically, lung cancer patients.
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Lag Time Between Evidence and Guidelines: Can Clinical Pathways Bridge the Gap?
03/22/2019
Lag Time Between Evidence and Guidelines: Can Clinical Pathways Bridge the Gap?
Dr. Pennell talks with Dr. Sushil Beriwal about guideline variability and how care pathways might play a role even in situations where the best practice seems clear.
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CancerLinQ: Cutting the Gordian Knot of Interoperability
01/31/2019
CancerLinQ: Cutting the Gordian Knot of Interoperability
With the care of patients with cancer strewn across numerous settings, are electronic health records (EHRs) meeting the definition of interoperability according to the 21st Century Cures Act? Dr. Pennell speaks with author Wendy Rubinstein.
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