Partnering With Patients: A Collection of Perspectives From ASCO 2023

Oncology Data Advisor holds the utmost value for patient advocates and advocacy groups as they strive to prioritize patient-centered care and shared decision making throughout the cancer journey. At this year’s American Society of Clinical Oncology (ASCO) Annual Meeting, Oncology Data Advisor spoke with numerous individuals representing diverse aspects of oncology and asked them how they strive to partner with patients in their practice, research, and advocacy work.  

Allison Rosen, Patient Advocate and Director of Project ECHO at the American Cancer Society: I think the buzzword is shared decision making. That’s number one on my list—making sure you’re asking the patient about their needs. There might be a standard of care, but every patient is unique. Really talk to patients and make sure they understand about the research. Make sure you talk to them about their lifestyle beyond cancer, after the treatment is over. Hopefully everyone can be cured.By having that shared decision-making process, you get to know the patients, and you get to know their needs. You tell them their options, you discuss the options with them, and then you make a decision together. It’s educational, but it’s also informative as far as what the patient really needs outside of just chemo or radiation. What will work best for their lifestyle? They might have a very active lifestyle. They might not want radiation. They might want to have children. They might want to not have a certain type of drug that will prevent them from having children. I really think that my whole goal has always been, ever since I was diagnosed, to bridge the gap between health care providers and patients and survivors. We work together, first of all, to make that decision one-on-one to make that decision as far as care. But then also, let us help you if you’re doing research. Let us help you lend that patient voice to what you’re doing from the very beginning, so that you can be the most successful. We want all of our health care partners and clinicians and oncologists to be as successful as possible. We want to help share what worked for us and what didn’t work for us so we can help make them better health care providers.

Barb Kunz, MS, LCGC, Senior Genetic Counselor at the US Oncology Network: As genetic counselors, obviously we’re patient-focused anyway, right? We’re always looking for advocacy organizations and groups that we can partner with. Even when we’re with patients and we give results back within our network, we have resources that tie people into the advocacy organizations. If I saw somebody and provided them with a result that we found a specific gene mutation, we could lead them to organizations that help them and support them and provide resources. So, we’re very patient-focused.

Bradley McGregor, MD, Director of Clinical Research at the Lank Center for Genitourinary Oncology at Dana-Farber Cancer Institute: I mean, ultimately, every single treatment decision that we make is a shared decision. When we talk about this in the clinic—and we’re fortunate to be at an institute that has clinical trials, right?—the clinical trials are truly a shared decision making. As we go through the different options, we talk about the options that are available at this point in time, and there are treatments A, B, and C. These are the relative benefits of A versus B versus C, and then, what’s important to you? What matters to the patient? If you look at renal cell carcinoma, if you look at the National Comprehensive Cancer Network (NCCN) guidelines, there are so many options that you can use in frontline and second-line; there’s not one that’s preferred. And that reason is because we have great data for all of them. So it really does come down to what matters to the patient. So, are they in a situation where they really want to avoid a pill and they want to do a double immune-oncology (IO) therapy? Are they in a situation where they travel farther away? So, potentially coming in every six weeks versus every four weeks makes a difference. Are they in a situation where they really care about what happens in that first scan and they’re not looking to that long-term, or do they care about potentially coming off treatment long-term? There are so many factors that come into play, so I sort of take it as an honor to help guide that decision, but not to make that decision. Ultimately, the patient makes the decision and I’m there to provide some guidance and some knowledge to help make that the best decision possible for them at that given point in time, with the understanding that every decision we make, we may have to tweak. I tell my patients all the time, “There are no highways, it’s all local roads.” So, we’re going to go, and we’re not going to be getting on and going 90 miles per hour on the expressway. We’re going to be stopping at every point and saying, “Should we turn or keep going?” And we just have to constantly reevaluate.

Cassy Horton, Executive Director of Pickles Group: Absolutely. So, this is really simple. It’s something that we’re always reminding ourselves—just listening, listening with the intent to learn, having curiosity, and coming in not necessarily assuming that you know what the right answer is going to be. We’re in the interesting position of really wanting to listen to our kids. And sometimes, what we hear from the kids is even different than what we hear from the parents and the patients. I think it’s really just centering the voice of the stakeholders and the folks that you’re looking to serve, and being open to changing things or trying things in a different way that you wouldn’t have necessarily thought of. There’s so much value in the perspective that we can get from our families, from the folks that we’re working with directly. We can lift up that voice, but also if we’re not listening, we can’t champion and really meet the needs of the folks we’re serving.

Deepa Rangachari, MD, Director of Hematology/Oncology Graduate Medical Education at Beth Israel Deaconess Medical Center: I think that is truly a profound theme, and it’s one that is sacred and must be at the heart of everything that we do, both in our day-to-day work, but also importantly, to your question in terms of how we are training and mentoring people. I think the most important thing is for trainees to understand and articulate their passions and to make sure, when they’re not sure or when they are unclear of the direction that their career or other things are going, that it really comes back to what the inspiration is for those passions. This is almost always entirely rooted in wanting to somehow contribute to and elevate the human experience or to better serve our patients. I think it’s all about passion and remaining centered in the idea that passion is inspired by the patients whom we serve.

Erica Feinberg, PharmD, BCPS, Senior Clinical Data Analyst at the US Oncology Network: I think one of the key things with oncology patients is that oncology standard-of-treatment is really new therapies and research, so this really makes sure that all patients can get those novel therapies so that no one’s being excluded. That’s one of the keys that helps.

Funda Meric-Bernstam, MD, Department Chair of Investigational Cancer Therapeutics at MD Anderson Cancer Center: Yes, I think it’s really important for patients to be aware of targets like HER2, especially in diseases where HER2 is not commonly tested or not commonly expressed. So, it’s really important to make sure that there’s patient advocacy surrounding active testing for rarer targets and increased recognition of options available through clinical trials, as well as hopefully standard-of-care, too.

Lalan Wilfong, MD, Senior Vice President of Payer and Care Transformation for the US Oncology Network: I think one of the things the Enhancing Oncology Model (EOM) is going to focus on, in addition to what the Oncology Care Model (OCM) did, is truly that patient partnership. Making sure that patients have a full understanding of the disease that they have, their prognosis, the treatment they’re giving, and the potential outcomes and risks of that treatment is important to have that shared decision making with the patient. So, in order for a patient to have true decision making about the care they’re receiving, we need to spend time and energy in educating them about those things, so they can make the best decision for themselves.

Mandi Pratt-Chapman, PhD, Associate Center Director for Community Outreach, Engagement, and Equity at George Washington University Cancer Center: I think that America’s very diverse. We have a really diverse patient population. Cancer knows no boundaries, so it affects everybody. Our systems have privileged a certain subset of the population that tend to be better represented in clinical care and better represented in research. By starting to ask these questions, by starting to open a dialogue and create spaces that are welcoming and visually show that you’re welcoming to a variety of patients—including sexual and gender minorities from a variety of race, ethnicities, nationalities, and backgrounds—we have the opportunity to do it better. We have the opportunity to learn what’s important to patients, help that guide clinical decision making, and identify resources that are potentially LGBT-specific or affirming for particular patients. I think it’s really about increasing the dialogue and being there for patients without making assumptions. Then hopefully, my hope is that someday our research and clinical enterprise will proportionally reflect the diversity that we are.

Nicholas Phillips, MD, Physician Scientist at St. Jude’s Children’s Research Hospital: The first and most important thing is to get these results to our patients and to the community at large. One of the core missions of St. Jude’s, of course, is to disseminate all the information that we gather for free to everybody across the world. But more importantly, we want our patients to be able to act on the information. It may be 10 years before we develop a pharmaceutical intervention or some other kind of intervention for this brain aging phenotype, but there are things that our patients can do now, and we want them to realize that. Being physically active—and this is also in the non-cancer population that you can see this—there’s a huge benefit for preserving brain age if you can maintain activity. I don’t mean going to the gym for 30 minutes a day and getting on a treadmill and lifting weights, but just staying physically active. Find a hobby that you’re engaged in that you can do three times a week—tennis, swimming, whatever—and do that, and that will help maintain your brain age. The other thing you can do is mental gymnastics or mental fitness and learning new things. Again, you don’t have to go to college and learn calculus, but just pick up an activity that you’re interested in and read about that or engage and learn new things. That also will help preserve your brain age.

Michael Halpern, MD, PhD, MPH, Medical Officer in the Healthcare Delivery Research Program at the National Cancer Institute: That’s another great question. As with the employers, one of the main barriers tends to be clinicians not talking with patients about these issues, about financial hardship or cost of care. Broadly, though that’s certainly gotten better, there’s a specific need to discuss being able to work and how cancer and cancer treatment might affect their ability to continue working, at least in the same way that they’re working now. Clinicians should be very open to talking with their patients. Patients want these conversations; they want advice from their clinicians. They trust their clinicians, and they want to get senses from them about how their cancer and cancer treatment might affect their job, affect their finances, affect the way they live beyond the treatment. Clinicians should be prepared for these conversations, should practice them, should know the kind of things to say, and should know outside resources that patients might be able to take advantage of to help them during this time.

Nicholas Robert, MD, Chief Medical Officer of Ontada: Partnering with patients is very important at Ontada, the US Oncology Network, McKesson, and Sarah Cannon Research Institute. Patients are front and center. We recently did a study with the University of Maryland, looking at social determinants of health when it comes to doing research in community oncology. The University of Maryland has what’s called a patient program, which gives patients the opportunity to provide feedback to researchers, which might not always be good news because you might get some information that you probably should have known but didn’t know. One of the takeaways is to reach out and engage patients. For some time, the Institute of Medicine has said that patients should be the center and should be part of the decision-making process. Actually making that happen is a bit challenging. One of the things we’ve done in Ontada is that we have a patient portal called Ontada Health, and that gives patients an opportunity and a platform to reach out to their physicians and their teams. But it also gives us an opportunity to reach out and provide educational information, and it provides an opportunity to ask patients questions. Moving forward, per the theme of ASCO this year—just as it was only a couple years ago, when social determinants of health was a theme—I think we’ll find more efforts, both in academic settings but also in community oncology settings, where there’s more reaching out to the patient. I’ll finish up by saying that we talked about social determinants of health. If you identify a patient with a barrier in terms of their health care, food insecurity, or transportation, it’s one thing identifying that. It’s another thing doing something about it. In our network, US Oncology, we are rolling out a platform called Find Help, where using the patient’s zip code, you can identify resources that can address some of those barriers, like food insecurity and transportation. I think we’re taking it to heart that our role is to improve patient care, and that journey certainly needs to involve the patient—not passively, but actively—and not only the patient, but also their caregivers.

Noelle Cloven, MD, Gynecologic Oncologist at Sarah Cannon Research Institute: Well, I think patients are more involved in their care than ever. I think more people are becoming advocates for themselves, so just make patients aware of what clinical trials are available, as well as standard treatments, just so they know all of their options before they start a new treatment. Also, the schedule and the side effects and quality of life are going to be things that are very important for our patients moving forward.

Puneeth Indurlal, MD, Senior Director for Care Transformation at the US Oncology Network: There are two aspects to focus on when it comes to patients. One is whether there is any compromise to the efficacy of the treatment. We used the guidelines that were put out by the Hematology/Oncology Pharmacist Association and endorsed by the NCCN, so we were confident that these approaches would not compromise the quality of patient care or the efficacy of these medications. The second space is where patients are also sharing in the cost burden of these medications. By implementing these dose-rounding strategies, we have been able to bend the cost curve and save money for the health care system at large, but also to reduce the patient burden of co-payments on those wasted medications.

Richard Newcomb, MD, Hematology/Oncology Fellow at Dana-Farber Cancer Institute and Massachusetts General Hospital: In general, in the sort of work that I do—you could broadly call it supportive oncology—you have to partner with patients. I think for me, a lot of the things I want to do are about improving the patient experience. Everybody’s cancer journey has ups and downs, and obviously innovating on treatments and treatment paradigms and sequences of therapies is super important, and there’s a lot of innovation in that space. I think also at the same time, we have to be innovating and supporting people’s psyches through the whole thing, and their families too. The only way you can do that is through patient-centered research—just asking people how they feel, following them, taking that information, and developing interventions that work for people. You have to partner with patients for that.

Robin Lally, PhD, RN, Bertha L. Pankratz Professor in Nursing at the University of Nebraska Medical Center College of Nursing:It’s absolutely essential. I think that for way too long, nursing and medicine have been in a vacuum, doing our science, but having those community collaborations is so important. In Nebraska, we have 500 miles across our state, and our patients have special needs. They’re rural, and they travel hundreds of miles to our only NCI-designated cancer center in the state. We really need to understand what is important to them and what they want to see in a program like this. We need to find out, can they and do they want to have distant-type coaching for their health? Especially for our rural folks, they’re very embedded in their own communities. That’s a question that we have at our site—how is this going to look when we look at the data? What is the feasibility for our rural participants?

Marilyn Hammer, PhD, RN, Director of the Cancer Center for Research and Nursing and Patient Cancer Services at Dana-Farber Cancer Center: I would also just echo that it’s essential to have the input of patients. We have patients who need to be part of our studies as part of the study team. We have patient advocates that will weigh in with us, and the community partnerships are absolutely essential. We need to better reach underserved populations, which, historically, we have not done very well at. It’s time to really get out there. It’s all about the community partnerships. Working with patients themselves as we design our studies is absolutely essential.

Stephen Freedland, MD, Professor of Urology at Cedars-Sinai Medical Center: It’s a great question. If you look back at my own personal history, I’ve been very interested in the research side of medicine. My dad was a PhD, I grew up in the lab, and I actually decided early on that I wanted to be a physician because it would make me a better researcher. I was interacting with patients in the clinic, talking to patients, hearing their concerns, learning what the barriers are, and seeing it from their point of view.We’re trying to bring more patient advocates into the work we do. It’s another area where we’ve got a lot of work to do, and we need to do better, but we are starting to partner with patient advocates. Again, I think having MDs be involved in the research is important. PhDs bring in tremendous wealth and skills and everything, but having that patient voice, whether it’s the patients themselves or the clinician side of things, is so important to help make sure we’re asking and answering the right questions.

Thomas Hutson, DO, PharmD, Director of the Urologic Oncology Cancer Research and Treatment Center at Baylor Sammons Cancer Center: This theme of “Partnering with Patients” translates well into my practice because that, to be honest with you, is how I’ve built my practice from day one. It comes back to why I chose to become an oncologist, which is to be the patient advocate, having my own personal family history of cancer and wanting to make it better. The regimens that we choose in kidney cancer allow me to do that again. Having multiple regimens with activity, slightly different tolerability profiles, and different administration schedules allows me really to sit there with the patient, make them a partner from day one in their care, learn what their goals are, learn what they hope to accomplish with their treatment, and then be able to individualize and select an appropriate therapy that I think based on my experience and expertise will get them to that goal.

Yan Leyfman, MD, Physician and Researcher at Mount Sinai Hospital, Icahn School of Medicine: A part of the mission of MedNews Week is to pick topics that are geared towards patients. We have a large patient audience of patients and patient advocates. That’s what allows us to stream to all the platforms and really reach patients. We’re trying to form partnerships with nonprofit organizations, as well, and use that as an outlet to reach patients and connect them with these global leaders so that they’re up to date on the latest information. Any way that we can be an asset and a resource, we will strive to do with all of our content. I just want to emphasize, it’s free; we’re not being paid for this. We do this out of the passion and the mission that we have to really make a global impact. That’s really, I think, what sets us apart from other organizations, because everyone on our team is passionate about making a positive global impact. I’m happy to see us continue to do that with each and every day.

Thomas Abrams, MD, Assistant Professor of Medicine at Harvard Medical School: I think patients are oftentimes uniquely excited to speak about their experiences, both the negative and the positive, and getting their perspectives is vital, especially for young oncologists who are just starting out who may not have a lot of experience doing it on their own. They’ve seen the models of their mentors, and I’m sure they get a lot of sense from that. But by seeing it from the patient’s perspective, they may really say, “Hey, maybe I could do things a little differently. Maybe I could be a little bit different in the way I deliver information, the way I explain things, so that patients feel supported.” Oftentimes, we’re tasked with a very difficult job of telling patients they have an incurable cancer, and we’re going to fight like heck to make them better, but ultimately, they are going to succumb to their illness, and that’s a difficult message. Knowing how the patient accepts that, how the patient receives that information, and how you can move forward from that, is of vital importance.

Transcript edited for clarity. Any views expressed above are the speakers’ own and do not necessarily reflect those of Oncology Data Advisor.

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