Transcript of What the Cancer Experience Registry Means to Bladder Cancer Patients with Dr. Kimberly Papay Rogers

February 8, 2022

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Voice over:                        

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit bcan.org.

Rick Bangs:                        

Hi, I’m Rick Bangs. The host of Bladder Cancer Matters, a podcast for by and about the bladder cancer community. I’m also a survivor of muscle invasive bladder cancer, the proud owner of a 2006 model year neobladder and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network or as many call it BCAN, producers of this podcast. This podcast is sponsored by Merck, Bristol Myers Squibb and Genentech.

I’m excited to have Dr. Kimberly Rogers, who is director of research at Cancer Support Community, as my guest today. She earned her PhD in health psychology from the university of North Carolina at Charlotte in 2020, where doctors Rogers received specialized training in biopsychosocial determinants of health, research methodologies, quantitative analysis and psychometric scale development. Dr. Rogers, I am so excited to have you here today to talk about the addition of bladder cancer to the Cancer Support Community’s, Cancer Experience Registry.

Dr. Kimberly Rogers:

Thank You, Rick. I am the delighted to be here to talk with you today about our community and our exciting work with this registry.

Rick Bangs:                        

Okay. So can you start by explaining what a registry is?

Dr. Kimberly Rogers:      

Sure. In the most general terms, a registry is a collection of information about people. And in the healthcare space, registries are usually focused on people with a certain diagnosis or condition. And registries can serve a variety of needs, but perhaps most commonly, data from registries is used to better understand health conditions, to develop new treatments or therapies and to evaluate and improve the quality of healthcare.

Rick Bangs:                        

Okay. So with that, can we talk about what the Cancer Experience Registry is and a little bit about its history?

Dr. Kimberly Rogers:      

Absolutely. The Cancer Experience Registry is an online research survey that helps enhance cancer care, improve healthcare policies and ensure support services better reflect the needs of people affected by cancer. It is our, sort of, flagship research study at Cancer Support Community, if you will. And there are a lot of clinically focused registries out there, but the Cancer Experience Registry is designed to uncover the broad impacts of cancer. Things like the emotional, physical, practical and financial impacts, right?

We know that cancer affects more than just the body. It can affect every domain of someone’s life. And this registry is how we collect data to learn more about that, to learn more about what it really means to go through a cancer experience. And the registry started way back in 2008 as a registry just for people with breast cancer, but it quickly became clear that there was a lot of value in this kind of data.

And so in 2013, it was expanded and opened up to anyone in the US or Canada who had faced or were currently facing any kind cancer. It was also opened up to caregivers who had cared for someone with a cancer diagnosis as well. And over the years, the survey questions themselves have been updated to keep up with the latest developments in oncology. And one thing that I think is really unique about how we’ve developed the survey is that, we, the researchers didn’t just come up with the questions ourselves. We’ve worked really closely with clinicians and advocacy organizations like BCAN, social workers and patients and caregivers themselves to develop questions that are focus on a wide variety of topics that really matter.

Rick Bangs:                        

I love this. I love the extension to the caregivers and the broad nature of the survey and the patient involvement. So let’s talk about how it’s relevant specifically to the bladder cancer community.

Dr. Kimberly Rogers:      

Of course. Well, most of the questions in this survey are designed to apply to anyone with any type of cancer, but we’ve also included a handful of additional questions for certain diagnoses that really let us dig deeper into that specific cancer experience. Because, while many aspects of a cancer experience are unfortunately pretty universal, we also recognize that dealing with breast cancer or liver cancer or bladder cancer can each come with their own unique challenges. And so we want to make sure that we capture that to some extent.

And those additional diagnosis specific questions, or what we call, specialty questions, allow us to do that. And so that’s actually why I’m so excited to be here today, because most recently we added bladder cancer as one of those specialty diagnoses, which means that we have now included some additional questions in the registry that are specifically tailored to the bladder cancer experience. And we know that this is a community that has some really unique needs. So we’re hopeful that the data we can collect here will help us better support bladder cancer patients and caregivers.

Rick Bangs:                        

And I have no doubt that, that’s going to be possible. So can you talk about some of the topics you cover for patients?

Dr. Kimberly Rogers:      

Oh gosh, we cover a really wide variety of domains. Let’s see, we ask patients about their treatment experience. What it was like in the beginning and what it’s like now. Their quality of life, access to care, where are they being treated? How often are they seeing their doctors? Is it easy or is it challenging for them to get appointments, their treatment decision making process, what their social support looks like and lots more.

Rick Bangs:                        

And you mentioned that the registry includes data about caregivers and as a former caregiver myself, it’s just so important, and it’s something that we don’t do a lot of research on. So talk a little bit about some of the topics you cover specifically for caregivers.

Dr. Kimberly Rogers:      

Yes. We know, of course, that caregivers are a crucial part of so many patients experiences. And also we know that caregivers themselves have their own unique experiences in providing that care and support for someone facing cancer. So in the registry, we ask caregivers about how much and what kinds of care they’re providing, what their quality of life is, how prepared they felt for caregiving, what supports and resources they received and really so much more.

Rick Bangs:                        

Yeah, that topic of preparedness, it’s just so hard to know what you’re going to be experiencing, and you just got to, to some extent, have to go with the flow, but to have some guidance on that. Well, just that one element would be so important for that group.

Dr. Kimberly Rogers:      

Absolutely.

Rick Bangs:                        

So tell me, why does the Cancer Experience Registry matter? I think you’ve in a hinted at it, but can you talk a little bit more about that?

Dr. Kimberly Rogers:      

Yeah, of course. I mean, there are nearly 17 million people living with cancer in the United States, and many more family members and friends who provide care for them. And each one of those people has a story to tell. And those unique and shared experiences combined provide really valuable insights. The registry was designed to elevate the voices of all people impacted by cancer.

We hear time and time again from patients and caregivers that they have needs that are simply not being met, yet they don’t always know how to go about, trying to change these enormous complex healthcare systems. The Cancer Experience Registry gives patient and caregivers a place to voice those needs, and to hand that information off to us so that we and our partners like BCAN can then turn around and create new supports and resources and advocate on their behalf.

Rick Bangs:                        

Okay, so we’re going to talk a little bit more about that in a minute, but can you share some of the most interesting findings that you’ve seen to date?

Dr. Kimberly Rogers:      

Absolutely. A couple of years ago, we published our 2020 annual report, which highlights some of the key findings from the registry data, up until that point. So for example, we learned that, half of the patients who completed the survey said that they did not feel prepared to discuss treatment options with their doctor. We learned that 4 out of 10 patients surveyed were at risk for clinically significant depression. That’s 7 out of 10 patients who were surveyed said that no one from their cancer care team talked to them about the cost of their care.

We were also able to look at specific diagnoses as well. And so for example, we saw that one out of three breast cancer patients who were surveyed reported that they’d missed out on job opportunities or career advancement. And we can talk about caregivers too. We learned that more than half of the caregivers who came into the study reported that they did not feel prepared to care for the patient’s emotional needs. And, of course, these statistics, they’re just barely scratching the surface of the data that we have, but our entire report is published online and is available for free. So anyone who’s interested in looking at more of our specific findings can check it out, right on our website.

Rick Bangs:                        

This is great. So this is such a broad range of topics, and many of them have not received the attention that they should get. And so preparing the patients, but also informing the medical community that these are important topics and that some of these results that you mentioned are just missing the mark. That is just absolutely critical.

So I think patients always want to know that when they participate in research, that there’s going to be some meaningful change that’ll happen, even if that change is only going to apply to future patients. So can you talk a little bit about the actions that have been taken by advocacy groups like BCAN or institutions, doctors and patients and caregivers themselves, with the findings you’ve collected so far and any specific examples you could give would be great.

Dr. Kimberly Rogers:      

Yes, I am so glad you asked this question, because I think this is one thing that really makes Cancer Support Community and this registry so amazing. Our organization, Cancer Support Community, has three distinct branches. We have a research branch, where I am. A policy branch and a direct services branch, where we offer support and resources. So the really amazing thing is that when our research team collects and analyzes data, we can then share our findings with our policy team and our direct services team. And our policy team actually takes those findings and goes and advocates at locals, state and federal levels for changes to healthcare policy.

Just as one example of this, in February of last year, the policy team met with congressional staff and press to advocate for preserving Medicare Part Ds, six protected classes. And they used data directly from the registry on emotional distress and anxiety to help support their arguments there.

And then, like I mentioned, we also have a direct services branch, where we and our partners have provided patients and caregivers with over $50 million in free support and navigation services. And data from the registry has been used to inform the development of some of these resources.

For example, we have, award-winning, easy to understand educational materials for patients and caregivers available on our website, and data from the registry was used in the development of those materials. Plus, we’re able to share our findings with advocacy organizations like BCAN, who can then take the data and use it to develop real solutions. So you can really see, when we collect data in this registry, it doesn’t just get filed away in a cabinet somewhere. It gets used to impact real change for real people impacted by cancer.

Rick Bangs:                        

Yeah. And I can see where you’ve already impacted the bladder cancer community, even though we may not know it. And the opportunities that we will have with this registry are really exciting. And I’m sure BCAN is going to be chomping at the bit to take on these issues that you point out. So why is bladder cancer being added and why now?

Dr. Kimberly Rogers:      

Well, the decision to launch a registry specific to patients and caregivers affected by bladder cancer stems from our knowledge that bladder cancer presents some really unique challenges and treatment complexities. And our partnership with BCAN really set the stage for moving forward with this addition to the registry. And so we feel really confident that insights generated from this project will help Cancer Support Community and advocacy groups like BCAN, provide even more effective and efficient services to those affected by bladder cancer.

Rick Bangs:                        

Okay. So I’m assuming some of the folks in the audience are getting excited by what you’re saying. And so talk a little bit about who should and could participate.

Dr. Kimberly Rogers:      

Yes. Well, I would guess that quite a few people out there listening to this podcast are certainly eligible to participate. The registry is open to any adult, so over 18, who has been diagnosed with cancer at any point in their life, or who has been a family or what we call informal caregiver to someone with cancer. Though, I will point out it is only open to people who live in the United States, or US territory or Canada.

Rick Bangs:                        

Okay. And so if I belong to this community that you’ve just invited, what’s it going to take? What does participation involve?

Dr. Kimberly Rogers:      

It’s actually pretty easy. You just go to the registry website and you click on a button that says, you’d like to start the survey, and then you sign up either as a patient or a caregiver, and then you can start answering the survey questions right then and there. And keep in mind, the survey is completely confidential and you can do it on your computer, your tablet, or a smartphone.

The entire survey takes less than an hour to complete, and you don’t have to do it all at once. You can start and stop the survey whenever you like, because we email each participant their own personal link to get back into the survey, if they decide they want to stop and finish it later. So, we’ve worked really hard to make this as easy as possible for patients and caregivers to do. And we really appreciate each and every person who takes the time to come to the registry and answer these questions and share their experience with us.

Rick Bangs:                        

And so if everybody’s getting their own personal link, that means both the patient and the caregiver and the family member could participate, because they’re each going to get their own unique link.

Dr. Kimberly Rogers:      

Absolutely. And that’s something that we actually are really excited about now with our most recent revision of the registry platform. We now have the ability to link patient and caregiver data together. So we can look at how a patient’s experience impacted their caregiver and vice versa. And that’s a really, really valuable part of how we can use this registry data.

Rick Bangs:                        

That’s terrific. Absolutely terrific. All right. So what’s the expected impact on bladder cancer treatment experience?

Dr. Kimberly Rogers:      

Well, the survey is really designed to uncover unmet needs related to treatment decision making, treatment side effects, social support, all kinds of things. We know that both patients and caregivers need more support, right? I mean, the reality is, thanks to organizations like Cancer Support Community and BCAN. There are a lot more resources available now than there were decades ago, but we still have long ways to go. And it’s our hope that by listening to patients and caregivers and by bringing their voices together in the registry, we can better understand where the gaps still are. At the end of the day, it’s all about improving support and resources for the bladder cancer community.

Rick Bangs:                        

Yeah, I can just speak for the 15 years since I was diagnosed with bladder cancer, the immense changes that BCAN has made and some possibilities that sound really exciting here. So I’m really looking forward to seeing these results.

Dr. Kimberly Rogers:      

We are too.

Rick Bangs:                        

Yeah. So Dr. Rogers, I want to thank you for your time today and giving us a better understanding of this fantastic tool called the Cancer Experience Registry. Your brand new outreach to the bladder cancer community, to include its unique and not so unique experiences and your new partnership with BCAN.

Dr. Kimberly Rogers:      

Well, thank you so much for having me, Rick. I really appreciate the chance to share this exciting opportunity with you and all of your listeners.

Rick Bangs:                        

That’s awesome. So for those who would like to get a copy of the 2020 Cancer Experience Registry, or for those that would like to participate and add their data to the bladder cancer section of the Cancer Experience Registry, what website should they visit?

Dr. Kimberly Rogers:      

Sure. It’s www.cancersupportcommunity.org/registry. And on that website, you can find more information. You can read that 2020 data report. You can watch videos from patients and caregivers who have taken the survey and you can enroll right in the survey itself.

Rick Bangs:                        

Okay, so www.cancersupportcommunity.org/registry. In case people would like to get in touch with the Cancer Support Community. Can you share how you would engage them?

Dr. Kimberly Rogers:      

Of course. So we can be found right on our website, www.cancersupportcommunity.org. And you can see all the different kinds of exciting things that we’re doing to help improve the lives of patients and caregivers. And if anyone is, of course, out there on social media, you can also look for us on Facebook, Twitter, Instagram, LinkedIn, just search for Cancer Support Community.

Rick Bangs:                        

And they’re open 24/7 in most of those venues. That’s terrific.

Dr. Kimberly Rogers:      

That’s right.

Rick Bangs:                        

So just a reminder, if you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1888-901-2226. That’s all the time we have today. Thank you for listening and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Dr. Rogers.

Voice over:                     

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network or BCAN. BCAN works to increase public awareness about bladder cancer, advanced bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast and additional information about bladder cancer, please visit bcan.org.