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Centering the patient’s voice: A discussion


March 2022

Centering the patient’s voice: A discussion

In the final episode of the season, join us for a panel discussion about patient perspectives on a range of topics at the forefront of evidence generation.



Narrator: Previously on ResearchX.

Dr. Erlene Seymour: Hello and welcome everyone to ResearchX! It was so great to start things off with our inspirational, "Can We" video. My name is Dr. Erlene Seymour, and I'm a Medical Director here at Flatiron Health. I'm very excited about this episode today. It's really good to see different people in the audience today from biopharma, academics, and policy groups. As a reminder, this episode is part of our ResearchX 2022 season, where we're exploring how can transform oncology research and patient care.

Prior episodes took a deeper dive into data, data capture, and use cases, but today we're focused on the patient voice and discussing the actual impact of real world evidence on patients.

We've got two fantastic patient panelists here. They'll be sharing perspectives on using patient data for research, as well as the value of real world data in generating evidence. We're really excited to have Robert Mittman here to join us and he will be moderating our discussion today, and he will also introduce you to all of our guests in a bit. But before we begin, Dr. Arun Sujenthiran, who is the Clinical Lead of Flatiron's UK team, and I, will briefly introduce you to our two patient-centric groups, the US Patient Advisory Board, and the UK Patient Voices Panel.

While we do have a packed agenda, we will have some time at the end to ask questions to the panelists. In order to do that, pay attention to the Q&A option, the tool at the bottom of your screen. You can place questions there at any time during the webinar, and you can even reach out to us afterwards if you have any other questions about today's topic. If any technical difficulties arise, please also let us know through the Q&A tool. We will do our best to help. Please accuse any interruption from our pets or loved ones, like many of you, many of us are still working from home. So with that, I will hand the mic over to Arun to introduce our two patient groups.

Dr. Arun Sujenthiran: Thank you so much, Erlene. It really is a privilege to speak about our Patient Advisory Board from the US and also our Patient Voices Panel from the UK today. Ensuring all the work that we do at Flatiron can benefit cancer patients now across the globe is really fundamental to Flatiron's mission. And last year, we were really delighted to stand up both of these groups. Bringing together cancer patients, caregivers, patient advocates together, so we could really empower the patient voice and help us as a company continue to understand what's important to patients.

So, although there are a lot of shared interests between these two patient groups, the focuses and engagements between the groups and Flatiron are a little bit different. The US Patient Advisory Board has been focusing on gaining perspectives from patients on RWE, as well as opportunities for research and advocacy. The Patient Voices Panel focuses on direct patient engagement and education.

Dr. Erlene Seymour: So a little bit more about the US Patient Advisory Board, this is a diverse group of 10 members who are leaders, cancer survivors, and advocates representing seven different patient advocacy organizations. The Patient Advisory Board (PAB) has been involved by collecting their very important patient insights on how we think through real world evidence and also gathering their intuition on how best to communicate about our impact on patients. What's very exciting is we're now brainstorming ways we can do future research collaborations with our patient advocacy organizations at Flatiron, and I'm happy to introduce Wenora Johnson, who is a member of our US PAB. And you'll be hearing from her in a few minutes.

Wenora Johnson: Thank you, Erlene. And again, if I could just say, my name is Wenora Johnson. I am a three time cancer survivor diagnosed with Lynch syndrome. I'm a Navy veteran, I'm a mom, I'm a grandmother. I'm also a very passionate patient advocate who works with various organizations educating patients about clinical trials, genetic testing, and cancer survivorship. So for me, it's important that patients are aware of testing options that can be correlated with clinical trials and biomarker testing. So that's important to me, and thank you for allowing me to be here.

Dr. Erlene Seymour: That's wonderful. Thank you, Wenora. I'm going to hand it over to Arun and he'll tell us more about the UK Patient Voices Panel.

Dr. Arun Sujenthiran: Thank you, Erlene. This is our amazing group of six cancer patients and caregivers that you can see on screen right now, and they make up our UK Patient Voices Panel. You'll get a chance to hear from Della who's so kindly joining us today a little bit later. Our group has a wide range of experiences. They've all had different cancer journeys, they've had different levels of familiarity with real world data, and they've all been involved in really different aspects of patient care, whether that be charities or patient advocacy groups. We launched last September and we've been meeting once per month. And here you see a very recent Zoom picture of one of our monthly Patient Voices Panel meetings. What has the UK panel been up to? We've really wanted our patient group to understand what we do at Flatiron and also why we do it. And as a result of that become part of our team. We've set up an onboarding program- the panel had the chance to deep dive into Flatiron’s business. We've already had the panel get involved in reviewing and featuring in our UK website. And they've also joined in speaking engagements like this today. We've also started orgs and publications similar to the work that we've done with DATA-CAN previously. DATA-CAN is the UK health data research hub for cancer. Looking forward in the UK, Flatiron’s building partnerships with national health service trusts. And as part of this, we're really looking forward to getting our patient panel group to engage with all the patient advocates and patient board members at these cancer hospitals. And now, I'll turn it over to Robert to begin our discussion.

Robert Mittman: Thank you so much for the introduction Arun! Let me add my welcome to Erlene's and to Aaron's. Thank you so much for setting the stage here. I'd like to describe a little bit of what's going to happen during the panel. I'm going to have a conversation with Wenora and Della for about 15-20 minutes. Then, there are a number of points that they're going to raise that are I think really going to be interesting to get Arun and Erlene's perspective. So really to understand how Flatiron is thinking about these issues of real world evidence, real world data, and what it means to patients. As Erlene mentioned, there will be time for questions and answers from you. So I'll point you now and I'll remind you a couple of times to use the question and answer button at the bottom of your screen and we'll try to get to as many of those as possible. Wenora, thank you for introducing yourself already. Della, I'd like to ask you to introduce yourself as well and talk a little bit about your story and how you got engaged as a patient advocate.

Della Ogunleye: Good afternoon, everyone. My name is Della Ogunleye and I got involved like Wenora said, when I was diagnosed with breast cancer in 2010, which was my first diagnosis, and my second diagnosis was ovarian cancer in 2019. So the first time was a shock to me because I didn't see representation of black people impacted by cancer. From where I come from, Nigeria, Africa, people always think that cancer is a white man's disease. When I was diagnosed 12 years ago, everybody asked me, "Hey, where did you get it from? How did you get it? And I myself was quite shocked with all the organizations not even representing us in any of the campaigns or leaflets. So I took it on myself when I was well enough to actually barge in and say, "Look, we need more representation. We need our voices heard."

As soon as we hear “cancer” the next word you think is “death”, you die. People are like, "Gosh, you can't have had cancer. You had the baby cancer. You didn't have the cancer that kills. " Education awareness wasn't out there. And that's how I started my campaign. And not only did I have breast and ovarian cancer, I was now told I have the BRCA2 gene mutation. I need to educate people in my community. I participate in meetings and workshops to empower myself so I can empower others and then empower them to ask questions. And we need our healthcare professionals to help us as well. That is my introduction, thank you for having me.

Robert Mittman: Great. Thank you. Thank you, Della. So we had a preparatory conversation and Wenora, in that conversation, one of the things that you mentioned, and Della I think just alluded to it, is that when people are first diagnosed with cancer, and actually throughout the cancer journey, there's an overwhelming amount of information, overwhelming number of choices and decisions to make. Could you talk a little bit about what you see as effective education and also effective support for people as they are diagnosed and go through their cancer journey?

Wenora Johnson: Absolutely. And Robert, thank you for that question. And so if I could begin from the moment that we are diagnosed with cancer, we as patients and even caregivers have to deal with an overwhelming amount of information. Keeping that information organized is important for tracking our journey, for preparing discussions with doctors and making important ongoing decisions about our health. Now, oftentimes when a person is diagnosed with cancer, family and friends kind of rally around them for support, but little do they know that their support and access to other support resources makes a huge difference in our survival and our cancer journey overall.

Now, if you think about it, enhanced social support can help and improve an individual's disease outcome and chances of reccurrence. So some of that can be lifestyle factors that can either help in progression or digression of our cancer journey. And if I could break it down into maybe four areas and the first one being the physical wellbeing, the psychological wellbeing, the social wellbeing, and then material well being. All of that is wrapped into the cancer patient's journey and survival.

Robert Mittman: Great. Thank you. Della, you've faced a very similar set of dilemmas, but with the National Health Service, instead of the American healthcare system, what was your experience like relative to the amount and type of information, the decisions there to be made?

Della Ogunleye: Yeah, thank you, Wenora and Robert, because with me, as I said, cancer is viewed as a white man's disease. So what you initially go through is getting a wig. The wig I got wasn't for a Afro kinky lady, it was a white person's wig. I had a prosthesis that wasn't meant for my skin tone. The only education I got was actually going back to Nigeria to be told, "Oh, there is one for your skin tone. They have it in America." Because Americans are well exposed, they know”. So it was all the education I was receiving and me sitting down in the rooms of healthcare professionals and me saying, "Oh, I didn't know they catered for colored people." So it's that education that is needed.

We had to start that education. It's getting better now, but catering for black people is still way, way, way far behind. Sometimes the charities give us make-up to feel better and the products are still for white people. The lipstick doesn't match my skin tone, the foundation that doesn't match my skin tone. So cancer is still seen as, "Hey, it's all white." And catering for your mental health, your wellbeing, going to do exercise and even sometimes going to healthcare professionals trying to say, "Oh, it's not what you think it is. It's not cancer." Because even they themselves, maybe all the medical books don't show black people have cancer too.

They try to dismiss it, "Oh, it can't be." The ovarian cancer I was told, " Oh, you're constipated. Buy some prune juice." Meanwhile, I was dealing with ovarian cancer. So to me, it's all about educating the people to educate us and we to educate them that this is what we need and I'm happy we could talk about as well because our experiences, like when I'm on chemo, my skin tone changes. It goes darker. I don't know how many people are in clinical trials as a black person. So there's a lot of things, but we're getting there. We're getting there by talking, by having us here, we're getting there.

Wenora Johnson: And Robert, can I add a little bit more onto what Della is saying because it's so important because when you educate cancer survivors, this empowers them in their journey. And I'm so glad to hear that Della is talking about how it's getting better because it gets better through support groups and advocacy information, nurse navigators, all of those people are the important aspects to this survivorship.

Robert Mittman: Yes. Thank you for that. And Della, I really had no idea when you say that your concerns as a black woman weren't represented. The number of dimensions to that is really quite a bit more than I could have imagined. So thank you for really explaining the whole range of that.

Della Ogunleye: Thank you.

Robert Mittman: In our preparatory conversation, we also had some conversation about clinical trials. And one of the points that was made is that cancer doesn't respect national borders. It doesn't respect boundaries in any way. And yet our clinical trials, both in the US and in the UK, tend to be rather narrowly focused geographically in terms of patient populations and so forth. Could you talk about a picture of what more inclusive cancer research would look like to you?

Della Ogunleye: With me I always start, you need to educate people because my education went back to reading a book about Henrietta Lacks and what she went through in a clinical trial. We still come from that, "Oh, they're using us as guinea pigs. I don't know. I don't want to be involved. It's not the real medicine. They're just giving me a fake one." So everything comes down, you know why we're doing this? We're doing this for better drugs, for better treatment, to continue to evolve. Because what I now know, if I knew that 10 years ago, wow, I don't think I'll have another cancer. I'll be able to say, "Look, can you test me for a gene mutation?"

Like I said, it's all education. And if you empower healthcare professionals to engage with us in like, "Oh, do you want to take part in clinical trials? This is what it's all about. I keep saying I benefited from somebody else's clinical trial and if I can help for the future, that would be a bonus. So it's all about educating our patients and professionals to say, "Look." And I think they always find the easy way out, the people who already know, "Oh, just come and be part of this." But they need to bring new, the younger ones, we just need this education to be widespread.

Robert Mittman: Yeah. Thank you. Wenora.

Wenora Johnson: Well, I'm going to say diversity and inclusion. Diversity and inclusion is so important. When I look back to my own cancer care, I had a great oncologist. I love her dearly. Yet when it came to my cancer care, I would've greatly appreciated just being asked about clinical trials. Sometimes people of color are just never really asked. And that's kind of the biggest hurdle to do is just ask.

And then the other part is when it comes to inclusion, how about representation? I'm more likely to even join a trial or consider a trial when I see like representation, maybe someone with my skin tone or person of color who's directing that clinical trial. And by all means this isn't a total cure all because diversity, equity, inclusion is kind of here to stay. It's a long haul and it's a long journey to begin with. But if we start there, at least by asking the patient and being inclusive, I think we are really onto something then.

Robert Mittman: I'd like to shift to a slightly different question and the patient journey for patients with cancer, you've both experienced it multiple times. It can be very fragmented from a patient perspective and also for clinicians that the information gets captured across a lot of different and often disconnected information systems, both in the US and the UK. What have your experiences been with this fragmentation and what have you had to do to either account for or overcome, address the fragmentation in the care and in the information about the care that you were receiving? Wenora.

Wenora Johnson: Well, first of all, it's misinformation or disinformation. The misinformation is the worst, because of course we're now living in the age of digital technology. Digital technology can be a good thing and it could be a bad thing. The bad part is that it spreads things that are not true, or you see maybe more bad things taking place maybe with a clinical trial than the good outcomes. All of that plays on a person's mind and their psyche of whether or not they will participate in things. It's so important to stop this misinformation train. This is something that all our agencies and organizations are constantly dealing with. One of the organizations I'm working with today, is putting out videos about misinformation making sure that if a person gets some information, is it coming from a .org or a .gov. Verifying information to really make the patient think.

Robert Mittman: Yes. Della, what about your experience in the UK with the degree of either integration or fragmentation that you have experienced with cancer care and the information about cancer care?

Della Ogunleye: I think in the UK, we still have the mindset of we don't know what they're using our data for. Where are you selling my data ? If you come and tell me this is why you're doing what you're doing, I'll be more inclined to take part. Clinical Trial Day in the UK is on the 20th of May and one of the organizations I am part of is doing a program or blog that will capture details about clinical trials. While I was preparing for this, I was thinking to myself, "Why don't we have a real -world data day for organizations to tell us what they are doing without data, what is real world data all about?" Maybe pick one day and say, "Oh, it's all about real-world data day today. This is why we do what we are doing. This is why we're using data."

We need to evolve. We need to move on. I was one of the people that said, "Oh, I'll never do online banking," or, "I'll never shop online." But my kids are like, "Everybody's doing it now." One day we'll have to join the force of all our electronic evolution. I don't know all of my cancer pathways and everything should be captured electronically and I should be able to see it. But now that I've evolved, I've got the UK NHS app on my phone now. I can see everything about me. But initially, if I wasn't doing things like this, I would think, maybe they're selling my data abroad. I don't know what they're using it for." Again, it comes down to, if you tell me why you're doing what you're doing, I would follow step and say, "Yes, I want to be a part of this."

Robert Mittman: Yes, I'd actually like to bring Arun into the conversation right now. Arun, relative to the fragmentation that I was mentioning before, what has Flatiron been doing to address that fragmentation and then also the concerns that were just raised by Della?

Dr. Arun Sujenthiran: Thank you, Robert. I mean, I think the fragmentation, both of the patient journey, particularly in oncology, that each individual has through the different subspecialties and treatments that they have is something I certainly as a clinician have heard and many others too. But on top of that, I think the sort of fragmented journey is also reflected by where information about a patient's cancer is kept within a hospital or a hospital system.

One of the things that I don't think is unique to the UK, but pretty much an international issue, is that clinical information, whether that be what the doctor or nurse is writing about that patient in their electronic health record, whether it be the reports of the imaging that patient's had, or whether it be information about the biomarker testing that patient's had, tends to live in different clinical systems that aren't well connected.

Flatiron's approach, and Della and the rest of the patient panel have really helped us get into this on how we explain it to the public and patients, is bringing together all of these data from all of these fragmented sources, organizing it, standardizing it, and then creating it into research-ready data sets. I really hear the point about education and about representation. I think what real-world data has the opportunity to do is really for communities that perhaps are underrepresented, whether that be on ethnicity, whether that be on socioeconomic status, any group, real-world data has the opportunity to collect that data. It's just about bringing all of that important clinical information together in an organized way.

Robert Mittman: Great, thank you. I want to acknowledge that Della had to leave, to catch a train, unfortunately. Great thanks to her. Wenora, that focuses more energy and attention on you. I've got a question. You, in your intro, talked about biomarker testing and the importance of that. One of the big themes that is gathering steam is new cancer therapies that are targeted based on biomarker testing. Could you talk from the patient perspective on both the experience of precision medicine and then also the promise of it?

Wenora Johnson: Absolutely, I can do that. As a three-time cancer survivor, who knows that I'll probably have additional cancers in my future, I really had to come to terms with understanding my immune system, and that number one, that's the first and last defense against cancer, and using something like a targeted treatment like immunotherapy can strengthen my immune system and can ultimately give me greater chances for treatment options.

Now, research knows that all cancer patients' genetic markers and mutations are unique for each individual. While I have an MSH2 mutation, differing genetic markers of cancer explain why the same type and stage of cancer do not respond similarly to receiving the same treatment. My MSH2 treatment will be treated differently than someone else's just because, again, of those genetic factors.

Now, because cancer is a disease of genetic mutations and each patient's genetic testing is different, their molecular profiles, biomarkers, which reveal targeted therapies will vary. Identifying myself as a Lynch syndrome patient means two things for me. It means that I want to be around for my grandchildren. This photo here kind of reminds me that I need to tell her about my history of cancer, her understanding of the genetic position it puts us in and that in the future if they do get cancer, there are better chances of treatment than when I started.

Robert Mittman: Thank you. You just gave me chills. Thank you for that. I'd like to actually carry a little deeper into what you're talking about because I know you have thought a lot about educating patients, educating families. As you think about the complexities of cancer research and treatment, the risk and benefits of different treatments, particularly with biomarker-driven, targeted therapy like we're talking about here, the efficacy and different subpopulations, there's a fair amount of complexity to that. Could you give some sense of the best way to educate patients and families about those complexities?

Wenora Johnson: That too is a great question. Foremost, it's not just really treating the patient or educating the patient. It's in treating the whole tribe that comes with the patient. Think about it. It's the patient themselves, it's their caregivers and it's their family. Finding creative and innovative ways to educate the family about these treatment options has been a discussion that's been ongoing for a while.

For some organizations that I'm working with, we're creating videos or things on Instagram or using Twitter, using all the social media platforms we can to make individuals well informed of decisions about maybe targeted therapies or biomarker use. Facebook has been really good for that. Especially, if you've joined a support group, maybe using that particular method when individuals can just all gather together and talk, but it's ongoing on how to educate the patient.

Robert Mittman: Great, thank you. Erlene, I'd like to bring you into the conversation as well. One of the big themes throughout the ResearchX series has been integrated evidence. Could you talk about the role of integrated evidence in facilitating precision medicine the way we've just been talking about it?

Dr. Erlene Seymour: Right, this is great timing. I'm glad that Wenora is here to give you a patient perspective on things. I want to highlight that the research that we do doesn't just benefit the patient. It benefits their family. It benefits their caregivers. All the research that we do when we're looking at biomarkers, it will help many people.

The integrative evidence that we have, currently we have a great clinical genomic data set that's linked to FMI. Because we have that data set, we can actually look at many patients with Lynch syndrome, many patients with BRCA mutation and which gives us more insights to research questions we weren't able to answer, specifically in prospective trials because these can be smaller populations. It can be harder to accrue them.

I think one important point that I think everyone has repeated here is that clinical trials don't represent everyone. They only maybe represent 4% to 6% of patients. The really impactful thing about real-world data is that we are getting that data and all of those patient journeys of the other 95%. We're giving you what's actually happening. To Wenora's other point as far as misinformation, we're giving you a bigger picture of the truth. We're giving you that data to see what exactly is happening to patients outside of trials and when the drugs go into market. Integrated evidence and putting all those pieces together on the patient journey really helps drug development and all of our customers that use our data for research.

Wenora Johnson: Robert, if I could quickly add to what Erlene added, I came across these tips for better patient education. Some of these tips just plain and simple demonstrate interest. I like how Erlene said it, just establish trust. There has to be this trust factor. On the patient side, when I'm coming into that office and my provider is asking me, outside of the realm of health, about my work life, my home plans and maybe my hobbies, he's established a real interest in me. That goes a long way into me trusting him as a provider when he does want to provide me with information about clinical trials and things of that nature.

Then adapting to the patient's learning style. There can be barriers that include language, culture, formal education, things like that. Then just age-appropriate because cancer doesn't discriminate. Finding innovative ways like using podcasts and things of that nature to really help people get educated.

Robert Mittman: Great, thank you. Before I move on to a couple of questions for Arun and Erlene, I'd like to remind the audience that you can submit questions using the Q&A button near the bottom of your screen. We'll leave some time at the end of the session for your questions for Wenora, Arun and Erlene.

Arun and Erlene, I'd like to get a little bit of a sense from you, I mean, you're very engaged with the Patient Advisory Board and the Patient Voices Panel. You've really shown your commitment to bringing patient voices to the community through this webcast, but are those two boards the first that you've engaged with patients or are there other ways that you've engaged with patient advocacy organizations early? Erlene?

Dr. Erlene Seymour: You're absolutely right. The Patient Advisory Board and the Patient Voices Panel is not the first time we've engaged with patient advocacy organizations. We have had some grant mechanisms we've shared with the American Cancer Society, as well as research collaborations with the Friends of Cancer Research. We've also helped some of our academic collaborators even apply for grant mechanisms that are offered by patient advocacy organizations. Most recently, there was an awarded Leukemia and Lymphoma Society grant for that purpose using our data in a grant, which was great. What I love though about the Patient Advisory Board and the Patient Voices Panel is that we're getting direct perspective from them, which I think has been very advantageous in terms of how we are doing things with our data now. As you can hear from everyone, diversity, equity and inclusion is a major point in this. We are taking steps to kind of push the envelope there in terms of our data models and what kind of research we can do. We haven't engaged with patient organizations in the past. We are doing it now. We're pushing the envelope a little bit more, I think. There's a lot of things we can do.

Robert Mittman: Thank you. There's a range of, essentially, patient-centered priorities that you are building into your work. Arun, could you talk a little bit about some of the ways that the Patient Voices Panel has contributed to you having a more integrated picture of a patient's journeys?

Dr. Arun Sujenthiran: Yeah, absolutely. As I mentioned earlier, I think it's really apparent from what we hear from patients and also our panel that there is fragmentation on that cancer journey, but I think it's really about bringing together all of those data items together just to ensure that the data sets that we create in the end are sort of fit-for-purpose. That makes me think about sort of other use cases where potentially patients can benefit. I think you can go a step up.

We have a collaboration with NICE, which is the health technology assessment body in the UK. They were featured in a previous ResearchX session. I think what's really exciting there is we're working with them to understand how real-world data can be used in markets where after a drug's approved, you need to show clinical and cost effectiveness and use real-world data for that. And there's a real opportunity for well collected real-world data to potentially accelerate some of those decisions. And of course, bring these newer and more effective therapies to patients directly. So these are the sort of conversations we're having and we're learning so much just from the feedback we get from all of their different experiences.

Robert Mittman: Yes. Now, with the amount of clinical records that you have access to, Erlene, and you kind of alluded to it, the relative narrowness of the populations in clinical trials. Presumably with your reach, you can get more of an understanding of underrepresented populations, people with rare mutations, people with rare cancers. Is that the case?

Dr. Erlene Seymour: Yeah. Absolutely. And we've actually been using our research. We've done collaborations and our partners have done their own research, answering really unique questions because our data set is very representative of many patients who are not on clinical trials. And the more we know about it, I think, the less misinformation we have. What's really powerful about real-world data is now you have those voices of the 95% of patients. And our mission from day one has been to learn from every single patient every day. So we're just seeing that come to fruition. And I think there's a lot of other things we can do.

Robert Mittman: Thank you. So if I can kind of put on a patient advocate hat for a second. One of the things that I hear from patient advocates and, Wenora, you may be able to confirm this, is it's sort of the drumming fingers. Which is, when are we going to get treatments? How can we get treatments that are better and faster? Rather, get treatments faster that are better treatments. Wenora, you may want to sort of flesh out my characterization of what patients are asking for. And then I'll have a question for Erlene and Arun from that.

Wenora Johnson: It makes me automatically think that we want faster treatment. We want it now. And of course, if everyone knows the FDA's phases of approving drugs, we know that that process can almost take up to 15 years. And one of the things I have to appreciate now is that AI and data collecting is helping maybe move that faster. And no higher example than we had with COVID. A COVID vaccine has come into place and treatment for COVID, if you've gotten it. So it can be done. It's now just moving that needle some more to do it.

Robert Mittman: Great. Thank you. So Erlene and Arun, as you think about that priority for faster, better drugs, can you talk a little bit about how integrated evidence and particular real-world evidence, real-world data contributes to that need for speed?

Dr. Erlene Seymour: Arun, you can start.

Dr. Arun Sujenthiran: And I think it touches on the point that Della mentioned earlier that there is a lot of misinformation out there about clinical trials, and she alluded to an example of that. But there's also misinformation about what real-world data can be used for, right? And I think all of us who are involved with real-world data need to get better at explaining what are the use cases and how they directly improve patient care. And one of those we touched on today, and there's so much more to say about it is that integrated evidence picture. Is identifying precisely those cohorts that don't make it into the trials for whatever reason, due to access and making sure that they can be represented and we report outcomes on them and have that ability to enhance the trial data that's out there at the moment.

Robert Mittman: Great. Thank you. Erlene, anything to add to that?

Dr. Erlene Seymour: Yeah, absolutely. So I know this audience well knows that we use real-world evidence in regulatory use cases. So there may be situations where we do have some clinical trial data, but if we just had a bit more, especially in patients who are not well represented, say they have a comorbidity, or maybe there's a better dosing regimen that's a bit more convenient for patients so they could not have to go to visits so often, we can actually give that data along with the supportive data that they already have, and regulatory use cases and the FDA or the EMA, they can decide, if we see this happening in the real world, maybe we can think about this additional indication or this dosing regimen.

Robert Mittman: Great. Thank you. Arun, I know that being situated in the UK, you've got some reach beyond the UK into Europe. Could you talk about the need and the potential through Flatiron's platform, well, the need in general and the potential through Flatiron's platform for more global reach for clinical research.

Dr. Arun Sujenthiran: Thank you, Robert. So just that everyone is aware, Flatiron does now have three international businesses in the UK, Japan, and Germany. And I think it's such a fantastic opportunity. And there is a gap in these markets currently, and there's so much we can learn from what Flatiron's been able to achieve in the last 10 years with real-world data and output. And some of the regulatory use cases that Erlene mentions and the research use cases that our clients use our data for. And I think it's really exciting that we're able to bring this data, we're able to learn from more cancer patients across the globe, create stronger and richer data sets and hopefully aim for the bar of more representation. And I know that we're trying to do that in each of our separate countries. But the thought of what a global aggregated data set, what that could achieve, is really exciting. And it's great to work on that.

Robert Mittman: Great. Thank you. And, Erlene, I know you have spent a lot of time at the bedside and I know you're kind of on the other side of the fence now, but if you think about the patient journey, the fragmentation that we were talking about, can you talk about how Flatiron's platform could help with clinical interactions at the bedside?

Dr. Erlene Seymour: Okay. So lots of you know that besides having our data set, we also have tech products that help our clinicians at the bedside. They are designed by actual clinicians, which I think is very powerful. You want a doctor to be designing your EHR so you're not just at the whim of clicks for a billing system. So a couple of our tech products do that, and there's promise that some of our tech products will even go even further. And I'll tell you in a couple instances. So we do have some products that put up NCCN guideline treatment and dosing to help clinicians get the evidence based, recommended treatments, easy at their fingertips.

We're working on trying to get biomarker testing easier at the bedside so that it's not taking a long time and patients and doctors can just talk about what is their best treatment option and what do we have to do rather than doing a lot of administrative stuff on the back end. And then there's the potential of streamlining clinical trials. We already have some ongoing work with trial matching. And this is where it's going to be really cool and powerful for biomarker testing and trying to match patients by their biomarker status. So there's lots of possibilities with our tech products at the bedside to really be impactful almost directly to the clinicians and the patients at point of care.

Robert Mittman: Great. Thank you.

Wenora Johnson: So Robert, can I sneak something in really quick?

Robert Mittman: Please do. Yes.

Wenora Johnson: This is just really, really good news to hear. And I love what Flatiron is doing because they're recognizing the treatment of the whole patient and that's important. Number one, they're being inclusive. They're allowing the patient's voice to be heard, but along with the patient, when I say the whole patient, it means the emotional, the mental, the spiritual, the social, the whole financial aspect of it is being talked about and discussed and how the data and information from that can be used to help give us all a longer life. And if I could just leave you with this quote that I like, because I love quotes and quotes are my therapy, that “People will forget what you said. People will forget what you did, but people will never forget how you made them feel.” And when you make people feel as though they are important and include them, we have a better world altogether.

Robert Mittman: Wenora, this is fantastic. I mean, if there's a takeaway from today, that's a great one. We do have an audience question. Arun, this is for you. Could you talk about how real-world data improves patient care? And in terms of equality and diversity, what can we do to get younger people involved in the Patient Voices Panel?

Dr. Arun Sujenthiran: That's a really good question. Maybe I'll take the second part of that first. So in the same way that real-world data provides representation, we also want to mirror that in our Patient Voices Panel. We've tried that geographically and all six of our members come from different parts of the UK. We've tried that in terms of their tumor background. We're really trying to also engage younger people. Naturally it's difficult because of the age group that cancer occurs in. But we're working with both our panel and also other organizations to make sure that we can hear the voice of younger cancer patients and carers.

On the first point around how it improves patient care, I think some of the points that Erlene had mentioned, Flatiron has a number of tools that have been created out of strong real-world data. And I think the quality of the data is really important. Because when you are using your tools, anything that's involved in patient care, whether that be research or clinical care, it's really important that you have really strong quality processes, assurances that the data you are using is accurate so that you can have confidence in some of the outbreaks in research and clinical practice.

Robert Mittman: Wonderful. Thank you. So we're near the end of our time here, and I'd like to ask all of you. And, Wenora, you kind of have answered it, but I'm going to give you another chance to, if you would like. If there's one thing that you would like the audience to take away from our discussion today, what's that one thing? Erlene, I'll start with you and then Wenora, and then Arun, I'll give you the last word. Erlene.

Dr. Erlene Seymour: So I'm going to lean on something that's come up with the US PAB so many times, but I think you guys have done a really good job of really pushing us to express what our impact on patients is. And as we've gone through this exercise, as we've gone through our meetings, I think the realization that what we do is currently impactful is a big deal. I mean, I'm talking to everyone in the audience and including our patients is what we do here with integrated evidence and research on it, it matters. And it matters and it does provide good things for patients. Even if it doesn't seem like it sometimes when you're deep into the weeds of your research, it absolutely has that impact and it can do more. So this is just the first step to recognize that and to communicate that.

Robert Mittman: Wonderful. Thank you. Wenora.

Wenora Johnson: Well, I think for me being a cancer survivor, that I'm going to go a little bit to that education information short side. In that it should cover all aspects of cancer survivorship, it should include access to special care, support services that address the physical, the psychosocial impacts of cancer and treatment, and it should be embedded in our cancer survivorship care plans. So for me, that's what's vital and important. And again, I can't be more appreciative than allowing my voice to be heard on it.

Robert Mittman: Thank you. Arun.

Dr. Arun Sujenthiran: That's such a great point, Wenora. I think for me, and hearing what we've heard from both of our panel members today, it's really about representation. And we've talked about it in so many different ways. I think with real-world data, we all accept there's really an opportunity to use representative data, but just to hold ourselves accountable to make sure that the research we do, sort of gets at that and answers the questions about those populations.

Robert Mittman: Wonderful. Thank you so much. So this wraps up episode six and actually the entire season of ResearchX. As a reminder to you in the audience, you can watch full episodes from the entire season on the Evidence Desk, and that's at I'd like to thank all of our speakers today and all of you participants for being here. The insights are fantastic and I appreciate that. Thank you for that. For you participants, I'd like to give you a friendly reminder to take the survey as we close out, which will help us to improve future webinars. And that really wraps it up. Thank you all so much. Stay healthy, stay safe and goodbye.