In Pursuit of Patient-Centered Care - Karen Knudsen

May 5, 2020

Karen Knudsen joins Alicia Morgans to discuss the motivation, vision, and drivers behind this year's GU ASCO 2020 meeting "in pursuit of patient-centered care". Along with other planning committee organization, Karen Knudsen was responsible for and played a key role in the formulation and direction of this year's meeting. She highlights the multidisciplinary considerations and new advancements the planning committee sought to implement in the meeting's agenda. Dr. Knudsen emphasizes this meeting was geared around the latest science, the latest findings, and things that we need to anticipate in 2020 as we look forward to new interventions, but, also highlights that the meeting brought in new elements recognized over the last several years that are becoming increasingly important such as new interventions for GU malignancies, considering patient-reported outcomes, patient quality of life, and financial toxicities. 


Karen Knudsen, Ph.D., Executive Vice President of Oncology Services, National Cancer Institute (NCI), Sidney Kimmel Cancer Center - Jefferson Health, Philadelphia, Pennsylvania

Alicia Morgans, MD, MPH Associate Professor of Medicine in the Division of Hematology/Oncology at the Northwestern University Feinberg School of Medicine in Chicago, Illinois.

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Read the Full Video Transcript

Alicia Morgans: Hi. I am delighted to have here with me today, Dr. Karen Knudsen, who is the Executive Vice President of Oncology Services at Jefferson Health as well as the Director of the Sidney Kimmel Cancer Center in Philadelphia, Pennsylvania. Thank you so much for being here.

Karen Knudsen: Thank you for having me. It's really a pleasure.

Alicia Morgans: Wonderful. Well, I am so excited to talk to you about the GU ASCO 2020 program because you were really the woman behind the machine this year. You helped to really guide and formulate the direction, the vision, of this meeting. So can you tell us a little bit about what your thoughts were and how you really helped to put that into action?

Karen Knudsen: Yeah. Thank you for asking. I've had a fantastic group to work with, both with the steering committee, as well as the planning committee, with representatives from SUO and Astro and ASCO. We each bring a different vision into the meeting of what we think should be covered. And as I think was illustrated in every session that we've had so far, it's that multidisciplinary consideration of the new advances that really makes this meeting special. All of us together in one room, leaving each talk thinking about what is the next best thing to implement for patients with GU malignancies.

So this year we looked back very carefully at what we'd done in the last several years and things that we'd done in the past we wanted to continue. Without question, it has to be about the latest science, the latest findings, the things that we need to anticipate in 2020 as we look forward for new interventions. But we also wanted to bring in new elements that we recognized over the last several years were becoming increasingly important. As we've identified a large number of new interventions for GU malignancies, considering patient-reported outcomes, patient quality of life, and financial toxicity is something that we thought should be increasingly incorporated into the presentations and consideration.

So this aligned very well with what we developed as the theme of this year's meeting, which is in pursuit of patient-centered care. And I think that just defines beautifully the underlying mission really of what we set about for this meeting.

Alicia Morgans: Absolutely. And I love that it is in pursuit, really highlighting that it is an ongoing process and that the patient remains at that center. But we are always actively pursuing this, moving forward, even as we stand here, or sit here, still today, there is work to be done and we are still doing that work.

Karen Knudsen: Yeah. And I also shouldn't have left out the fact that we also have patients, patient advocates.

Alicia Morgans: Yes.

Karen Knudsen: And survivor groups represented here at the meeting who've been very vocal on the microphone and submitting their questions online, to really help us understand the patient's point of view for all of the new interventions that we're reporting and the things that we're considering moving forward. I think it's increasingly an important component of the ASCO GU meeting.

Alicia Morgans: Wonderful. Well tell me a little bit about the keynote speaker that we had, David Penson, you and I both know him well and he's just, he's wonderful. How did you choose him? How did you choose his topic?

Karen Knudsen: He's amazing. So last year at ASCO GU, we tried something we had not done before, which is to have a single keynote speaker that could touch upon something that's of importance across all the GU malignancies. And last year his focus was on immunotherapy, and we had Dr. Gully from the NCI, and we just could not have picked someone better or really a better topic. He beautifully connected and wove through all of the things that were new, what works, and what doesn't work, for immunotherapy in the GPU cancers.

So this year we wanted to do something a little bit different, and as aligned to the theme, think about financial toxicity and quality of life. So as the planning committees started to discuss this and who could be that keynote speaker that could speak on behalf of all of us, we came across the concept of Dr. David Penson, who just delivered a phenomenal lecture today. I would encourage everyone who has access to that presentation to watch it. He illustrated a number of challenges for us, real unmet needs of how it is that we try to reduce the burden on patients, by giving them a level of understanding of what the financial impact is going to be of their care.

What came about was really an understanding across the group that many of our providers are not ready to give that information, that they're not skilled in how to communicate it, they might not even know post-authorization what an intervention might cost. And it's not just drugs, it's downstream labs, et cetera, and imaging. So, he spoke to a real desire and call to action for the providers to get that information. And I felt this very personally and deeply as a cancer center director and head of a service line as well seeing this is part of this responsibility lies in leadership and it lies at the cancer centers to put forward this information.
So that was really one outcome of the talk. One of the other major discussion points was hard evidence of what the impact is of financial stress on patients. There are patient-reported outcomes, but also on their true outcome and survival measures.

Alicia Morgans: Yes.

Karen Knudsen: And so this is something that we discussed today. Is this an adverse event? Is this something that we have to start thinking about differently? And I think these are really important points. One of the surprising things in his lecture was that this is not just limited to the United States. And he showed evidence from Canada and other countries that even when there is some universal health care system, this doesn't necessarily give protection to the number of patients who are facing these out-of-pocket costs that drive different behaviors.

Not to delve too deeply into our own experience in Philadelphia, but Dr. Penson and I spoke afterward, and I related to him a story of that something real life we see in our city. So in our cancer center, when we did our community health needs assessment, we noted that we had patients who would skip sessions for chemotherapy three days out of five, two days out of five. And in further investigation, we realized they were doing it to try to keep their jobs, and what they were doing was salary protection. And this related to what Dr. Penson was talking about today, the coping mechanisms of patients.

Alicia Morgans: Yes.

Karen Knudsen: So this was really disheartening to us. And so it was something that we realized we could do as a cancer center and as a health system to adjust our business model. So we opened the infusion center several years ago on nights and weekends and it's made an incredible impact on our patients.

Alicia Morgans: Yes.

Karen Knudsen: It's a busy time at the infusion center. So there's some things we can adjust in terms of how we deliver and even just when we deliver care. Much harder to do for radiation oncology, but these are the kinds of things that we as cancer leaders can adjust. But then there are others where it just really is true out-of-pocket costs that's devastating, that we have to think about. He really raised our consciousness today. I think everyone felt emotionally involved in the problem and actively wanting to pursue an answer.

Alicia Morgans: And I think that he also raised awareness among people who, not that people weren't aware, but they for many reasons maybe were focusing their attention elsewhere.

Karen Knudsen: Yes.

Alicia Morgans:  To put it a little bit mildly, and it sounds like leadership can play a role, and you have done so in Philadelphia, and that's not just leadership because someone has to cover those times and when physicians, nurses, others have to cover it. So we all, we all need to come together because you know, at the end of the day, patients may be other people for now, but at any point they could be us, they could be our families. So I love that you are doing this and raising this awareness.

Karen Knudsen: Yeah, I think you're right. Everyone has a part to play.

Alicia Morgans: Yes.

Karen Knudsen: In getting this done and whether that's education or whether it's changing the business model or just trying to help your patient with access to social workers and finding any way that you can. Dr. Penson talked about the role of centers in finding access to financial relief, from a large number of different types of foundations, and at least for us at our center, and I'm sure at yours and others-

Alicia Morgans: Yes.

Karen Knudsen: It's absolutely instrumental. They're doing hero's work.

Alicia Morgans: Yes.

Karen Knudsen: And are often the unsung heroes of a health system, a large health system. But really we try to highlight at least at our place as much as humanly possible, how critical this is for the patients that we serve.

Alicia Morgans: Absolutely. In addition to the fantastic patient-centric focus, you have directed the committee to really focus on digging into the science that drives these cancers. And I'd love to hear your thoughts about that.

Karen Knudsen: Yeah, so the pace at which we're understanding the biological basis of GU malignancies, anticipating resistance, and finding ways to intervene on resistance, is just accelerating at this unbelievable rate. In part because of liquid biopsies, access to more longitudinal ways to track a patient's performance, innovations in imaging, innovations in understanding genomics and genetics. And so we really wanted all of those to be highlighted at the meeting, and they have been so far. And to that end, we've also refined our focus on being able to interpret the science by adding an expert statistician to come in.

Alicia Morgans: Yes.

Karen Knudsen: And tell us in what was a really spectacular lecture about various ways to sharpen that focus, and ensuring that something is scientifically and statistically significant, but also clinically meaningful.

Alicia Morgans: Absolutely.

Karen Knudsen: And that that should be the North Star that we all point toward. And so I think the planning committee just did a terrific job of taking the latest evidence-based findings, the provocative new preclinical findings that are going to lead to next year's trials and putting them together for all the GU malignancies. I couldn't be more proud of the group.

Alicia Morgans: One final thing I want to mention before we wrap up. I commend the planning committee for the diversity of faces, and geographic diversity, gender, everything under the sun. We can see ourselves in the speakers and the presenters, in the people who are GU ASCO this year. And I know that that is in large part due to you, so kudos to you on that as well.

Karen Knudsen: Thank you. And it was, there were comments about that on Twitter today, so I'm glad it's being recognized, that we are, we've just got a terrific, diverse team and I think it helps strengthen the meeting.

Alicia Morgans: Wonderful. Well, I sincerely appreciate you putting together this outstanding GU ASCO 2020. The meeting is available in the virtual meeting, and people can come and see Dr. Penson's lecture, as well as lectures in prostate cancer, kidney cancer, urothelial cancer, testicular cancer, adrenal cancer, penile cancer. Every cancer one could think of related to GU malignancies. Hopefully I-

Karen Knudsen: You want GU, we've got it.

Alicia Morgans: We've got it. And it's all available on demand and it's available in the way that it is this year because of you in large part and the committee that you organize. So I really appreciate your efforts and I appreciate you taking the time to talk through some of these big issues and the motivation behind this year's GU ASCO 2020.

Karen Knudsen: Thank you so much. It's really great to be here.

Alicia Morgans: Thank you.

Karen Knudsen: Yeah, thank you.