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Transcript of BCAN’s Role in Bladder Cancer Research with Rebecca Johnson

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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 the Seagen/Astellas Alliance and Genentech. I am pleased to welcome today’s guest, Rebecca Johnson.

Rebecca is BCAN’s director of research, responsible for the day to day operational oversight in the management of all grant activities. She solicits applications, manages grants, supports investigators, and analyzes program efficiency. Rebecca also manages BCAN grants from pre award through award closeout, while working closely with BCAN’s senior management team and board to successfully achieve desired research outcomes. Rebecca has been advancing research efforts that prioritize patients for over a decade. Prior to joining BCAN, Rebecca worked at the Patient Centered Outcomes Research Institute, which many would know as PCORI, and the NIH funded DC Center for AIDS Research, which is known as CFAR, at George Washington University. Rebecca holds a master of public health from George Washington University and a bachelor of arts from The University of Michigan. First, I want to congratulate you on joining BCAN in this exciting new role, and I also want to thank you, of course, for joining us on our podcast.

Rebecca Johnson:

Thank you, Rick. I’m thrilled to be part of the BCAN team, and really honored to be asked to speak on this podcast. I’ve listened to a variety of the episodes and have learned so much myself through this vehicle and think it’s such a great resource, so thank you for the opportunity.

Rick Bangs:

Oh, it’s our pleasure. So I want to start by talking about this new role you have at BCAN because it is brand new, which in and of itself has to be exciting. So what triggered the role, and what do you do in that role?

Rebecca Johnson:

Yeah, absolutely. So I’ve been in this role with BCAN for almost a year and a half now, which is hard to believe the time has flown that quickly.

Rick Bangs:

Wow.

Rebecca Johnson:

And I’m continuously impressed with the BCAN team, the quality of the programming, and the reach that BCAN has, so it is really exciting. BCAN has always prioritized research as core to its mission. And previously, Dr. Stephanie Chisolm, who I’m sure many of the podcast listeners likely know, served as the director of research and advocacy and oversaw BCAN’s research programming. And I think there was a growing recognition from BCAN leadership and from BCAN’s board that the research program was both becoming more mature with more projects funded and nearing completion or completed, and that they wanted the research program to continue to grow in new ways. And at the same time, BCAN’s education and advocacy programming was also expanding, and in order to accommodate all of those goals and programs, BCAN decided to bring on a full-time director of research, which is the role that I stepped into.

And this has allowed Stephanie to focus on expanding BCAN’s educational and advocacy programming, which is really taking off in extraordinary ways and has allowed BCAN to dedicate more staff time and strategy to the research, which I know we’ll talk about a bit more. And so I think my role, you really nailed it in the bio that you gave at the start, so thank you for that, but I focus on overseeing all of BCAN’s research award programs, ensuring that our awards undergo quality and high level reviews, so that what we’re funding is rigorous and really answers priority research questions. I work with BCAN’s leadership and scientific advisors to develop new types of funding announcements or programs when we have the opportunity to do so, and to make sure we’re leveraging our research dollars in the best way possible. And as you mentioned, I also engage with our funded cohort of investigators, monitoring the progress of their awards and keeping an eye on the outcomes and the impact that our research funding is having, both on individual career trajectories, and on what information we’re adding to the bladder cancer research field.

Rick Bangs:

That was great overview and really helpful in terms of understanding why we needed this role. And so tell me about the breadth and depth of bladder cancer research at BCAN. What’s your focus and what would be considered out of scope?

Rebecca Johnson:

Sure. BCAN has been funding awards since 2013. And they really started the research program to fill in gaps in bladder cancer research because there was a paucity of research funds available at that time from funders to study bladder cancer, so not a lot of people were doing this or funding it. And this still remains a core focus of BCAN’s research program. We want to fill in the gaps, and so we want to fund the types of research that other funders aren’t supporting. As an example, oftentimes we’ll provide funding for an investigator to conduct a study that would give them some pilot data or early data that they could then build upon and take to another funder, like the NIH, or industry, and continue their research program.

And I think an important other key focus for BCAN’s research program that I think differs a bit from other larger funders is that we’re really focused on the individual and who we are funding, in addition to the research question itself. So BCAN really wants to bring early stage investigators and investigators new to bladder cancer research into the family, so to speak, into the cohort of bladder cancer researchers, so that we can keep building the next generation of researchers that will make advances into the diagnosis and treatment of bladder cancer. And so you’ll see that many of our award programs are centered around the type of investigator we’re funding. So I would say there’s not a lot that is explicitly out of scope for BCAN’s funding. We fund a wide breadth of research topics from basic science, laboratory science, to more clinical or translational research. But the programs that we have focus on ensuring we’re filling the gaps and funding the best and the brightest researchers.

Rick Bangs:

And filling that pipeline too, along the way, so that’s awesome. That’s so important. I can’t tell you how many researchers tell me about the problems they have in terms of building the pipeline, so that’s wonderful.

Rebecca Johnson:

Yes, it is.

Rick Bangs:

So tell me, where does Think Tank fit into research at BCAN?

Rebecca Johnson:

Great question. Think Tank is an integral component to advancing and sharing not only the research that BCAN funds, but the latest research in the bladder cancer field. And as many of the listeners likely know, the Think Tank is our annual bladder cancer specific medical meeting, and it really is the only one of its kind in the US, and it creates a collaborative space for bladder cancer researchers to identify priority topics or obstacles to research, and then work together to solve them, and to identify priority research questions. So the Think Tank is one of the main programs where we ask BCAN’s funded investigators to present the results of their research once their projects are completed, so it’s a great mechanism in that way for sharing what we funded with other multidisciplinary research, with patient advocates, and even industry representatives. I also want to note that we do provide access to those presentations about our research on BCAN’s website after the meeting.

Rick Bangs:

And how much funding has BCAN been able to provide to support bladder cancer research? And how does BCAN actually fund the bladder cancer research?

Rebecca Johnson:

Sure. So I’ll tackle I think the latter part of the question first. And we are very fortunate to have a variety of funders and partners, some from philanthropic organizations, some from private donors, or individuals that approach BCAN that are interested in funding bladder cancer research, and some from industry like pharma. We also have a very active and dedicated team of staff on our development team that are always seeking to identify new partners to add to this list because we really wouldn’t be able to make such generous and important awards without our funders. And to that end, to date since the inception of BCAN’s first awards through our last round of awards in 2022, we’ve provided over $5 million in research awards to support bladder cancer research, which is a really impressive number and reflects both the generosity of our donors and the number of really high quality applications we’ve seen come through our program for funding.

And so this includes our Young Investigator Awards, and as well as our Innovation Awards. And I’ll note that we also support early stage investigators to travel to attend our Think Tank meeting through our John Quale Travel Fellowship Program, and those dollars are not reflected in that total number I just gave because it’s not a true research study or research award, but it’s still another significant stream of funding. And we do expect to add to that number significantly in 2023, as we’ll be funding a couple of new awards for the first time, in addition to our standard research programs.

Rick Bangs:

Wow, awesome. Tell me a little bit about how patients and the patient voice, which is kind of central to BCAN’s DNA, how are they omnipresent in the research priorities and the implementations?

Rebecca Johnson:

Yeah, well, you stated it exactly. They are central. Patients really are at the center of all of BCAN’s research activities because ultimately, we’re hoping to generate research and outcomes that are useful and important to patients, and that will make an impact on factors that matter to patients like survival, quality of life, treatment outcomes. And even if the research we’re funding is really early on in its development, or more kind of laboratory based, the hope is that it eventually translates into another study that directly involves or impacts patients. So there are a few ways we involve patients that I’d like to highlight.

First, we have the Patient Survey Network, which was created in 2014. And that’s a network of engaged patients and caregivers who’ve been impacted by bladder cancer. And this group worked to identify a list of the most important unanswered questions in bladder cancer from the perspective of patients and caregivers. And that’s critical because we want to first, make sure we’re asking the right questions to study, but then also, making sure that the way we’re trying to answer those questions is the right way, and that the research is being done in a way that’s not overly burdensome to patients or misses the mark in terms of the outcomes they care about.

And we also have several funding mechanisms that require researchers to specifically study questions that matter and are important to patients. And we ask researchers to explain why this is the case and why they’ve selected a specific question in their proposal. And then during the review of the applications, we actually include patients advocates as part of the review process, which is so important. And we ask them to tell us and the scientific reviewers if they think the research hits the mark and addresses a really critical and important question from the patient’s perspective.

Rick Bangs:

And I think you also require kind of a patient version summary of the research proposal as well. Don’t you?

Rebecca Johnson:

Yes. Yeah, that’s a good segue into the last point I wanted to make. All of our proposals, we require both a technical and what we term as a lay summary, so that it’s accessible for our patient advocate reviewers. But I do also want to highlight here our Patient Centered Clinical Research Young Investigator Award, which is specifically designed to support transformational patient oriented clinical bladder cancer research. And as part of the requirements of that award, investigators have to engage patient advocates in the design of the study and in the selection of the outcomes. And we ask them to tell us how they did that. And this is actually an area where BCAN can help researchers because we have developed cohorts like the Patient Survey Network and can access patient advocates who are knowledgeable about research and interested in working and research, and want to lend their voice to research studies.

Rick Bangs:

That’s terrific. So how does BCAN decide what gets funded and what does not get funded?

Rebecca Johnson:

Yep, that’s a really important issue and kind of the crux of the whole process. So without getting too in the weeds about our process, BCAN uses a peer reviewed process, which is very similar to some other funders or to NIH’s peer review to make sure that we are evaluating the proposals we receive rigorously and equitably. And this means that we identify experts in the bladder cancer research field, so urologists, medical oncologists, social scientists, bio statisticians and others. And we assemble a review group who evaluates and scores the applications. And I want to highlight that a critical component of our review process are first and foremost, our scientific reviewers at research and academic institutions across the country, who agree to review grants for BCAN and provide tremendous scientific credibility and support for our review program, as well as our scientific review group chairs, who oversee the entire review process and lead the review meetings. And these are experts in the research field.

And once our grants are reviewed, they’re then recommended for funding to our Bladder Cancer Research Network Management Committee, or BCRN, which is comprised of leading doctors, scientists, and patient advocates representing all aspects of bladder cancer research. And this step is really critical in helping BCAN ensure that the applications we’re choosing to fund are not only scientifically rigorous following review, but also align with BCAN’s priorities and mission and really are filling key gaps, like we talked about before. And then finally, all of our funding decisions are approved by our board of directors before they’re being finalized or announced. And we also rely on a large … We’re fortunate to have a large scientific advisory board that we frequently call on to help advise us when developing funding priorities or new research opportunities.

Rick Bangs:

So you’re multidisciplinary, lots of input from people in different roles.

Rebecca Johnson:

Absolutely.

Rick Bangs:

And a rigorous process. So what’s the relevance or role of research in the clinic or in clinical care? If I show up as a patient, what’s the history behind it in terms of research and the role that research may have played?

Rebecca Johnson:

Sure. Well, so of course, research is really essential to advancing clinical care, which not only in the more obvious way of identifying new breakthroughs or discoveries and treatments, or how patients respond to treatments, but also because research or clinical trials themselves may be an important component of clinical care for some patients. Clinical trials can provide possible treatment alternatives to patients who may have not had success with the standard therapies or the approved therapies, and so a clinical trial might actually be the best course of action for some patients.

And in saying that, I always like to say that it’s important to know that in a clinical trial of a new drug for instance, the trial will be comparing the new drug, or the new therapy, whatever it is, to the current standard of care, or an already established treatment. So by enrolling in a trial, a patient will never be excluded from or restricted from the care they would otherwise receive. The trial is really just trying to see if we can make that care better in a different way. And so participation in a clinical trial is of course something that patients should bring to their physicians and discuss with them because a patient’s doctor will be able to help guide them in the right direction, make sure they’re eligible for the trial, discuss risks and benefits.

And I want to point out that BCAN actually has a helpful resource on our website to allow patients to do that more easily through our clinical trial dashboard. And through the dashboard, patients can search for active clinical trials near them either by state or by their bladder cancer disease state, and then bring the resulting list that they get to their doctor’s appointment and discuss if participation in a trial is maybe appropriate for them, is not appropriate, and which ones might be interesting or a good choice to consider.

Rick Bangs:

And the nice thing is in 2023, we have enough trials that it makes sense to have a dashboard and do some analysis because when I was diagnosed 16 years ago, there were very few trials, so there was not much discussion to be had, so it’s a nice change.

Rebecca Johnson:

Absolutely. That’s a great point.

Rick Bangs:

Yeah. So we’ve made all this progress just kind of in the last decade. So can you tell us about some of the key research that BCAN has funded in the past, and talk about research where results may have already been published?

Rebecca Johnson:

Sure. And there are many examples, I’ll just choose a couple for the sake of time. But I would encourage listeners that are interested in learning more about what we funded to visit our research sections of BCAN’s website. And you can find all of our funded awards under each award program. There’s a section called Meet Our Funded Investigators, where they can see what we funded. Or you can visit the Think Tank page of our website and actually watch presentations from our funded investigators. We just want to make sure that those resources are available for everyone.

But one example of research that we funded is Dr. Sarah Psutka’s Young Investigator Award. And this was funded in 2019, and Dr. Psutka is an associate professor of urology at The University of Washington. And she completed a study that looked at quantifying risk and resilience among patients with bladder cancer through a personalized risk stratification program. So the study sought to answer whether a new assessment tool that includes metrics like cognitive function, mental health, body composition, and other factors can help determine the appropriate treatment pathway before a patient receives treatment, and then inform patient counseling and education regarding what the impact of that treatment option might be for the patient. And so this study enrolled 94 patients, and demonstrated that this type of comprehensive assessment can be feasibly implemented in a busy multidisciplinary bladder cancer clinic, and help identify targets for things like pre-habilitation before treatment and informed shared decision-making about treatment options.

And prior to this study, this type of tool had not been evaluated at all in a bladder cancer practice. And so it’s I think of particular interest to listeners or to patients because this is a study looking at things like a patient’s shared decision-making with their provider about the type of treatment they’re going to receive and whether we can do that in a more effective and better way in the clinic. And what’s really exciting is that Dr. Psutka has now gone on to recently receive another award, an RO3 award from The National Institute on Aging to further this research and look at, see if they can predict functional decline and clinical outcomes in newly diagnosed older patients with localized bladder cancer. And so that award builds directly on the work that she completed in her BCAN Young Investigator Award, which is great.

Rick Bangs:

Wow.

Rebecca Johnson:

I’ll just give on other example of funded work that we’ve recently seen published if that’s okay.

Rick Bangs:

Oh, please.

Rebecca Johnson:

So another really exciting research project that BCAN supported, known as the UC Genome Project, or the long name is Urothelial Cancer Genomic Analysis to Improve Patient Outcomes and Research, so I’ll just say UC Genome. This just had results published in Nature Communications last November. And this was a collaborative effort by researchers from cancer centers across the US, read by Dr. Matt Milowsky. He’s the co-director of the Urologic Oncology Program at the University of North Carolina School of Medicine. The study wanted to potentially inform new biomarker guided treatment strategies for bladder cancer.

And so as part of his collaboration, researchers performed next generation sequencing on samples from 218 patients with metastatic bladder cancer to identify mutations that might warrant further study and to explore biomarkers. So they’re looking for gene mutations to try and predict how a patient’s cancer might act or respond to different treatments. And one of the goals of the study was to then generate a genomic report that patients would receive after they undergo the sequencing, with results of the sequencing, and maybe identify some clinical trials for them to participate in or highlight mutations that might be actionable. And this is exciting work because there aren’t a lot of predictive biomarkers out there identified in the metastatic bladder cancer setting, which means that all patients receive the same therapies, the same treatments, despite potential differences in their disease or tumors. And so now this project has resulted in a bio bank of clinical specimens and genomic data to become a resource for future translational research in bladder cancer.

Rick Bangs:

Wow. These are great examples of ensuring that the right patient gets the right treatment at the right time, and not just doing one size fits all.

Rebecca Johnson:

Exactly.

Rick Bangs:

Both Dr. Psutka and Dr. Milowsky’s work are centered around that.

Rebecca Johnson:

Exactly.

Rick Bangs:

So really, really fascinating. You’ve also got some projects in play, but they may not be published yet. So can you tell us about any of those studies? And what excites you about some of the things that haven’t been published?

Rebecca Johnson:

Sure. Yeah, we have a lot of projects that we’ve either just recently funded in our last cycle of awards, or plenty that are still underway from previous cycles. I think one that listeners might find particularly interesting is Dr. Brendan Guercio’s Young Investigator Award project. He actually recently presented on the preliminary results of this at the last Think Tank meeting, which is still available for viewing up on our website. But his award was funded in 2021. He’s a medical oncologist, and his study was titled Associations of Patient Diet and Benefit from Immunotherapy and Urothelial Carcinoma. And so his study’s looking at the gut microbiome as a potential modifiable predictor of a patient’s response to treatment with immunotherapy.

And so that’s a really kind of new and interesting field of study, is how the gut microbiome can impact treatment response. And this study followed patients receiving treatment and assessed aspects about their diet along the way, and is actually still enrolling patients beyond the original scope of their Young Investigator Award. I think it enrolled as we had the COVID-19 pandemic starting, which impacted pretty much all research across the board, so they are still enrolling and expanding their sample size. So there are some preliminary results that he shares from the Think Tank, but we’ll be really interested and excited to see what comes from that project.

Another one that’s even more recently funded that I wanted to talk a little bit about was an innovation award that we just funded in the last cycle of our innovation awards, and these are awards that are made to more seasoned investigators. They’re a larger award, and as implied in the title of the award, they’re really intended to fund kind of novel, groundbreaking, high risk, high yield innovative projects that have not been studied before. And this is Dr. John Sfakianos’ project on high resolution imaging to examine BCG resistance in non muscle invasive recurrent bladder cancer. And Dr. Sfakianos is an assistant professor in neurologic oncology at the School of Medicine at Mount Sinai.

And I think we’re particularly excited about this project because of its focus on BCG resistance. And it utilizes two novel technologies to look at patient tumor samples before and after treatment with BCG to better describe what happens to those tumor samples following treatment and better understand BCG resistance. And I think everyone listening to this podcast agrees that having a better understanding of BCG unresponsive disease is so important. And his project really has a clear pathway to potentially impact patient care with its findings, so that’s a really exciting project that we funded recently that we’ll definitely keep an eye on.

Rick Bangs:

Yeah. Both of those are really exciting, so look forward to getting more information on those as they progress. So talk about what’s new in BCAN research for 2023. We’re starting the year, so what’s new? Are there some research plans that you can talk about or some opportunities that you’re providing to support research?

Rebecca Johnson:

Absolutely. We do have some new exciting research plans in 2023. This year for the first time, BCAN will be making two new awards. And both of those actually opened for applications in 2022 as well, just preface to say that they’re not currently open, but they will be awarded for the first time in ’23. And the first is the Career Development Award, and this award is intended to support investigators who are within the initial seven years of their first full-time faculty appointment and have not yet received a major independent research award or grant. So this award is really focusing on that critical time period for investigators following their early stage funding or pilot funding before a large independent award, to allow them to bridge that gap and grow their research careers, which BCAN recognizes as a major funding gap and an area in need of support. And so this gets back to what we talked about before, really investing in the individual to grow that next generation.

And this is a $250,000 award over three years. And the applications have to propose translational, clinical, or epidemiological research that have a high likelihood of translating new concepts into clinical practice, which means that they’re more likely to have a direct and more immediate impact on patient care. So that’s an exciting new award that we’ll be announcing in the first part of this year. And then the second new award that we’ll be making in 2023 is BCAN’s first ever Translational Clinical Trial Award. And that’s to support early phase patient oriented research to reduce the burden of bladder cancer care and treatment. And this is a brand-new award for BCAN that will provide a maximum of $3 million in funding over 36 months. And this has a targeted scope, unlike our other funding announcements that really leave a broad scope and ask for investigator initiated ideas. This announcement specifically calls for proposals that will address methods to reduce the burden of care and overtreatment for bladder cancer patients.

And the overarching aim here is really to generate the evidence that’s needed to impact standard of care and move the needle in clinical practice. And I want to say that this new award was made possible by a generous individual donor. And so I want to point out that unlike our other awards, this is likely a one time award. We don’t know that it will continue, however, we do hope that in the future, we’re able to continue to be able to offer these types of different and larger significant awards with targeted scopes, and hope that this first offering kind of spurs on additional awards of this type.

And then lastly, to circle back to what I talked about, the UC Genome Project, we’re really excited about the results of that, that I just discussed earlier. And I want to highlight that the clinical and genomic data that was collected as part of that study will be made publicly available. So we’re hoping that’s a resource that many researchers will take advantage of. And we’re also going to be convening the investigators involved in that project to discuss what kind of funding mechanism or other mechanism BCAN can put together and support to allow investigators to access and conduct research using the bio bank samples that were collected and that are now part of that valuable bio bank. So this is a really great resource for future translational research in targeted therapies in metastatic bladder cancer and will be so important for BCAN to make sure that we’re putting together the right mechanism for careful use and access of those patient samples.

Rick Bangs:

I feel like a kid in a candy store. This is really so exciting. I’m dying to hear some of the results here, so and the other things that we haven’t even had a chance to talk about. So Rebecca, I want to thank you for your time today. You’ve given us a nice insider’s look at BCAN’s research and its quest to find new treatments for bladder cancer.

Rebecca Johnson:

My pleasure.

Rick Bangs:

If you’d like more information on bladder cancer research at BCAN, please visit the BCAN website, www.bcan.org, and look for the dedicated section on research. In case people would like to get in touch with you, Rebecca, could you share an email, a Twitter handle, or any other information that you’d like people to have?

Rebecca Johnson:

Absolutely. If anyone has questions or wants more information on research, they can reach out to me. My email is R. Johnson, that’s J-O-H-N-S-O-N, at bcan.org, so rjohnson@bcan.org. Or on Twitter, I’m at BCAN_research.

Rick Bangs:

Awesome. Just a reminder, if you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1-888-901-2226. 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. And thanks again, Rebecca.

Rebecca Johnson:

Thanks for having me, Rick.

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, advance bladder cancer research, and provide educational support services for bladder cancer patients. For more information about this podcast, and additional information about bladder cancer, please visit bcan.org.