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Pedro Barata: Hi, I'm Pedro Barata. I'm a GU oncologist at University Hospital Seidman Cancer Center, Case Western University in Cleveland, Ohio. I'm so, so happy and excited to be here joined by Dena Battle, president of KCCure, a very important patient advocacy group in the kidney cancer world. So Dena, thank you so much for taking the time to sit down with us today.

Dena Battle: Thank you so much for having me, Pedro. I'm delighted to be here.

Pedro Barata: Well, I have to congratulate you because you did a great, great job with your presentation at ASCO. And we're just chatting, we have been chatting about this several times about how important it's to bring accurate but objective, scientific data about patient perspectives in regards to kidney cancer, treatments for kidney cancer, perception of treatment of kidney cancer, how we communicate messages and so forth. And you are doing just that, which is quite remarkable. So congratulations for that. So you brought a study to ASCO, where it was born from a survey, but maybe instead of me summarizing what you did, I think it's much better idea for you to walk us through the process of putting that together in a way that you can then get good data and analyze it. So can you please tell us what KCCure put together and apply it to patients that I know you have direct access? Tell us about that.

Dena Battle: Yeah, absolutely. I think one of the things that's so important today in kidney cancer and really in any cancer is having good evidence-based information about patient perceptions. A lot of times we're operating under assumptions about what's important to patients and what doctors might think, what they might perceive as the patient telling them is important, might not necessarily always be entirely accurate. There could be a little bit of discord there. So I think a great value of the survey work that we're doing is that we're taking a lot of patients and then we're aggregating that into data that really is much more, more compelling for doctors when we present it that way. And it's a great opportunity for patients also to share their story in a way that well also contribute to meaningful change that can improve practice. The data that we presented today at ASCO, this was very specifically focused on metastatic patients.

Metastatic patients with the RCC, and we wanted to ask them perceptions about what's important to them when selecting therapy. We ask them questions about how they define success from their treatment. What would be the marker that would tell them, "This shows that my treatment is working." How do they define long-term duration? So a doctor might look and say, "Oh, this treatment has been working for two years, that's great." But to a patient that might not seem like as long of a period of time. So those are some of the questions that we asked in the survey and that's some of the data that we presented today.

Pedro Barata: So that's awesome and so thoughtful. Clearly you spent a lot of time, I know you got a lot of QC, you went through all those questions several times. I think what's also remarkable is the direct access you have to the kidney cancer community. So can you remind us or how many patients did you get answering those questionnaires and also what were the main findings? What do you see from going through all those results? What did you get? What are patients telling us?

Dena Battle: Yeah. So first how we do outreach at KCCure is we run patient communities. Outreach is the central pillar of our organization. We are in direct contact with patients every single day. We run online communities. So there's constant interaction between our organization and patients. And we do a survey like this because we have this level of trust, because we have this level of interaction, patients are actually excited to participate in our surveys. I actually have gotten thank you letters from patients because they were grateful to have been able to share their-

Pedro Barata: Their voice.

Dena Battle: ... voice through a survey. Our latest survey, we had over a thousand responses, and among that around 400 patients had metastatic disease. We also had other sections of the survey that was focused more on localized disease. But what we presented today was focused on metastatic. I would say the finding that is most significant that we really wanted to talk to doctors about is what matters most to patients when selecting therapy?

Because I think this is something that there is some patient-doctor discord in this space. So when we ask patients what is the most important factor, what they want is opportunity for a complete response, which kind of makes sense, right? They want to be cured of their disease. So number one by far, number one is complete response. And then the second is durability. Long-term response. They want to know that it's working for a long time. And interestingly enough, toxicity and cost are very last. They are the very least important factors that patients think about when considering therapy.

Pedro Barata: That's so interesting because you're telling me what patients are telling us, and some of this is something that you can sometimes feel when you are in clinic with patients. But let me ask you this, any of the results that you've seen were surprising to you when you looking to yourself like "You know what? I knew they're going to say this, but it's good to that we actually confirmed that." Or was anything surprising from all the data that you put together?

Dena Battle: Every single survey that we do surprises me. I'll always go in, we'll design the survey looking to answer specific questions. Usually there's some type of signal from our community that says, "This is a question that we should really look into." So every single survey, something comes back and really surprises me. That assumption that I thought would turn out to be right is isn't accurate. One of the first surveys we ever did, patients with localized disease. We asked them how frequently they'd want to be scanned. To be honest, I thought patients would tell us that they wanted more scanning, because we see a lot of anxiety. We see a lot of concerns. But the results actually showed that patients indicated they're actually happy with the scan regime that they had that doctors were giving them. So that was an important finding.

It changed our minds. That's why we do evidence-based research. With the latest survey, we were looking at combination therapy. We were a little concerned that doctors might be dropping oral therapy prematurely in an IOTKI combination. If a patient complaining about toxicity, it can be really easy to drop that oral TKI. When we were concerned that that might be happening, ultimately we didn't see a signal for that. We didn't see an overwhelming ray of discontinuation on the oral side. So that's great, but that's why we do it. That's why we do the surveys.

Pedro Barata: Right. So again, I cannot stress enough how important it is to actually have objective data of perceptions, of feelings of basically have a direct voice patient. I feel like patients have a way to tell us what is going on in a way that often it's not exactly the way we see it. We providers see it. So kudos to you to be able to keep doing this because this is not your first survey to exactly how you highlighted. I forget how many surveys you've done thus far, but always with clinical meaningful information. So I guess before I let you go, what's in the works? What do you like to highlight as the next step for this, that you think's relevant for us to highlight for the community, for the audience hearing us today?

Dena Battle: This is our seventh survey. This was our second very large survey with over a thousand patients. Some of the things that we're looking at doing in the future are a little bit more targeted surveys, how patients perceive risk and how they deal with uncertainty. Those are areas that we're really interested in and we think getting more information, could better inform providers in terms of communication, but also help us as an organization figure out what type of educational tools that we can provide that would really handle some of these issues that patients are dealing with. If their perceptions of risk maybe are different than what their doctor's perceptions are. How managing uncertainty when it comes to recurrence or progression with disease, things like that. So that's sort of a focus that we're looking at going forward.

Pedro Barata: Wow. Every time I talk to you again, and the work KCCure is doing reminds me every single day, why it is important to have patient advocacy at the table when we're thinking about what is going to be the next study for the patient? What is a study that makes sense? And having a player that is in direct communication with us providers, with the researchers, but at the same time with the patients. To me, it's the perfect bridge of getting patients who unfortunately do have to deal with kidney cancer and people who want to help dealing with kidney cancer. So thank you for that. Thank you for the work that KCCure does. It's outstanding work. Congratulations for the great job with this survey. I'm looking forward to get the paper out and keep doing what you're doing. Fantastic. You are really helping to get our kidney cancer community stronger. So thank you.

Dena Battle: Thank you so much.