Talk of the Towne episode 06: XpertPatient
Talk of the Towne is a podcast from Antidote focused on that special place where science and patients converge. It’s hosted by Richard Towne, PharmD, Antidote’s Senior Clinical Informatics Manager. Each episode, Talk of the Towne features a new guest from an Antidote partner organization, and takes an in-depth look at particular therapeutic areas, zeroing in on the story that our data is telling about how best to connect patients and research.
Our sixth episode features Risa Arin, Founder and CEO of XpertPatient, one of the newest members of Antidote’s partner network. XpertPatient is focused on helping new cancer patients understand their diagnosis and the differences between the latest oncological treatment options available.
In this conversation, Rich and Risa discuss the current landscape of oncology research and share some helpful tips for sponsors looking to engage patients on the topic of cancer clinical trials. Listen to the episode below, or scroll down to read the transcription.
Transcript:
Rich:
All right, welcome to Talk of the Towne, the podcast from Antidote that examines the critical place where science and patients converge. I'm Rich Towne, I'm a licensed pharmacist and the senior clinical informatics manager at Antidote. Today, I'm thrilled to welcome Risa Arin, founder and CEO of XpertPatient, one of the newest members of Antidote's partner network. Risa has harnessed years of health promotion experience at some of the leading companies in the country, to build an award-winning, next-gen website, empowering cancer patients. XpertPatient is on a mission to build active health consumers who are cancer-educated and feel confident being a true partner to their doctors and nurses. Welcome to the show, Risa, we're so excited to have you.
Risa:
Thank you so much, Rich. I'm so glad to be here.
Rich:
I know, I feel like we've got definitely a lot to talk about today. So more than 5,000 people a day are diagnosed with some form of cancer in the US, and that diagnosis is accompanied by uncertainty. Is my cancer curable? Do I need additional tests? What are my treatment options? The good news is that many cancer patients these days have options when it comes to treatment. There are more than 100 different chemotherapy drugs and eight immunotherapy drugs approved for cancer. There are often surgical options available to patients, as well. And there are more than 7,800 currently recruiting oncology trials in the US.
According to our friends at XpertPatient, the latest research shows that better-educated and involved patients experience less anxiety, fewer treatment side effects, and better outcomes. But more than half of patients don't feel confident in having treatment option conversations with their doctors. That's where XpertPatient comes in. Their website helps patients learn about their diagnosis, compare all treatment options, and create a conversation guide for their next doctor visit. And now, just in time for World Cancer Day, we're excited to share that patients can also search for a clinical trial on the XpertPatient website. That search is condition-specific and powered by Antidote.
Usually, we get deep into the science on the show, but today, I'd like to keep the focus specifically on patients. We know the research is moving forward, but given the overwhelming nature of a cancer diagnosis, and how quickly best practices change, how can we continually foster education engagement among cancer patients and their loved ones? There's a lot to discuss here, so let's dive right in. And the first question that I'm really curious about, Risa, is, what was the genesis behind XpertPatient, and what made you realize you could offer more to patients looking for cancer education?
Risa:
Yeah, absolutely. As you mentioned, I've been doing healthcare marketing for quite some time, and I've been working with a lot of the biggest oncology brands, launching their new products, as well as helping them promote to the different healthcare professionals, products that have even have been in market for some time but have new data to share. But one of the things that's always been really, really challenging is that, with all this amazing advancement, there's more complexity, there's more information. We talk about information overload for the HCPs. and I remember the day, I was sitting there, and I was thinking, wow, I mean, if the doctors are completely overwhelmed with the different brands, the different studies, the data, I can only imagine how overwhelming it is to an individual or a family, to someone that's completely new to a cancer diagnosis.
The other piece that was shocking to me was that I would sit and we would go over the financial support numbers for all of these different big brands and the utilization for oncology patient support. So Pharma is trying, they're out there, it's less than 20% of the money's allocated.
So either it's too complex to use it to get there or people don't know about it. And so there's just so much work that we can be doing and that we need to do, so much work that we need to do.
I started thinking about it, and started looking at what's out there. And the platforms that are out there today, there's a lot of information. And as you think about digital marketing, everything's moving more towards a personalized experience, so I kind of coupled my expertise in consumer, customer experience work, if you will, and my knowledge on what's going on in the cancer setting, and said, we need to do things differently. We can definitely do things differently. And then, when I started to look at the research, and it's shown over and over again that better educated, and more empowered patients actually achieved better treatment results, it was kind of a no-brainer. I basically said to everyone around me that I'm going to do this, and I built a prototype with the team in the Philippines.
I said, listen, I need to build a small prototype, and I took it around, and the response was incredible. The response was incredible from patients, caregivers, advocacy groups, healthcare professionals. And they basically said, hands down, we need something like this. And I kind of believed them, but you're still not sure until it's out there. But then, winning the award in December, the PM360 Smartest Innovation of 2022 Award kind of nailed it for me. I said, yep, we're definitely doing something right, we're doing something different, and with this, we're going to make a huge difference.
Rich:
That's amazing, and especially because that kind of service is so needed. Just for some clarity to me, when patients are diagnosed, is that when they usually start looking for information? Do they start with their doctor, do they just start Googling things, or when do they really start needing that information to start that discussion?
Risa:
Definitely. Well, what happens is, typically, we can see this in all the conversations we have, the patients leave the office after the diagnosis conversation. They really don't remember much, if anything at all. Same thing, even, on the caregiver front. And so, they do, they start unfortunately Googling, they talk to families and friends. they spend a lot of time on social media. And some of the information they get back is accurate, and some of it isn't. Everyone's situation is so unique, but that's definitely where it starts.
And from my perspective, it's about getting people that information, but really, in a way that they can break it down. I mean, they are anxious, they're nervous, they're scared, how do we start to use best practices from an adult learning perspective, to start to break down some of the complexity? Because it is incredibly complex. it's like kind of trying to learn a new language in a day, or maybe a week. And your life depends on it, and so, what do you do with that? So right now, there's no tools to help support you in the way that it could be done, and that's what XpertPatient is. It's really breaking down the complexity, educating people, empowering them so they can be a better partner with their doctor.
Rich:
that's really interesting, I want to dive into what you said there, with breaking down the complexity. What are some of the ways that you find XpertPatient has really broken down the complexity of a certain treatment. Is it the name, how it works, or what kind of information do you provide for patients there?
Risa:
So the first thing is, we have individual landing pages for each of the cancer types. So if you're doing a search for breast cancer stage two, you're going to land on the breast cancer landing page. So right out of the gate, you're getting something that's a little bit more distinguished. Then, when you come in with entering two simple pieces of information that people typically remember after leaving their doctor, what cancer you have and what stage you're at, you start a more personalized journey. And so, you're going to get information that's specific to that, and everything else is basically taken away. Included in that is content that's not just text-based, but also, it's giving people the option to watch a curated video, and there's also AI-powered audio over the content, as well, if people prefer to listen to content.
Everybody's different and so if you want to take a look at the diagrams and read the content, great. If you prefer a video, awesome. If you want to listen to something while you're driving, that's there, too. And so, it's really supporting people in the way that they best learn. And the most important piece of the site that I think ... I mean, it's all important, but the idea that you can compare FDA- approved treatment options side-by-side is something that's never been done before.
And for me, it's really interesting, so we are incredibly active consumers when we're looking at cars or we're looking at our phones, or we're looking at investments, but when it comes to our health choices, we're just not. And so, what we've done is, we've taken all the FDA-approved treatment options for each cancer type and stage, and put them side-by-side based on feedback from NPs and PAs in the oncology space, as well as patients and caregivers, so that people can start to look at, okay, here are my different options, let's think about me as a person, and my lifestyle and my goals. Which one's going to make the most sense for me?
Rich:
That's really interesting. So with that, when patients come in and they start looking for this information, is there a question that you find them asking over and over again with the type of treatment available? Is it cost, is it side effects, what's the biggest concern of patients coming to the site?
Risa:
Oh, definitely. Well, in general, I mean, all of the research looks at the financial toxicity of trying to pay for treatment. If patients can't pay for their treatment, or feel like they have the resources to pay for their treatment, they basically will stop searching. They're just not going to be engaged. And so, what we're trying to do is, wherever we can, bolster financial support within the site so that there's this confidence that, when they decide and find the right treatment for them, they'll be able to actually pay for that treatment.
it's not just about paying for the treatment, it's also paying for everything that you need to make sure you can go to your treatment sessions, for example, or watch your children when you go to your treatment sessions. So when people talk about this big bolus, this bucket of financial toxicity, and the cost of healthcare, it's not simply the cost of the treatment, it's also the cost of life around it to make sure you can have the best care possible.
Rich:
Do you think that these larger companies and treatment facilities are aware of these issues when they come out with information on these drugs? Because it seems to me that there's not a lot of information out there.
Risa:
Yeah, I think ... in fact, in preparing for this, I had a little bit of an epiphany, why aren't more people signing up for clinical trials? One of the most amazing opportunities would be, if you participate in the clinical trial, not only do you get the cost of the treatment and the support you need from a treatment perspective taken care of, if you also had more of your family life, be it if you have risks from a food and nutrition perspective, transportation, childcare, and things like that, also taken care of. And that's potentially a huge opportunity for some of the different pharma companies looking to host and support the clinical trials.
Rich:
Another thing that I know has been rising in popularity, and I'm not sure if XpertPatient has gotten involved here, has been a real push towards sightless clinical trials, or sightless treatment, where the actual service will come to your house and administer the treatment, or ... have you seen anything with that recently, sort of eliminating that travel burden for patients?
Risa:
I have not. I have not been focused on that, I haven't. But I would say, in some of the more reluctant communities, that could be a really nice thing. So I know, for example, in the Latino community, it's a family affair, if you will. A lot of the motivation, it's about helping my family if I do this. And so, perhaps bringing it closer to home, I'm sure it could only be a good thing, besides the burden of the cost of travel.
Rich:
Is there a certain piece of information available on XpertPatient that patients and doctors write back to you to say, this, in particular, was super enlightening. I know you mentioned the side-by-side treatment analysis, which is, once again, I think it's fascinating. XpertPatient is the only site to do that. Is there anything else that they've repeatedly written back with, saying, this was incredibly insightful, that you wish people knew?
Risa:
Yeah, I mean, a lot of people don't feel empowered, if you will, to ask questions. And so, one of the things that we added to the site are the top searched questions. So Google, right? Google is king. We put the top searched questions around each specific cancer type onto the site, one of the things that I realized is that most people don't remember biology class, and they don't remember their organs.
And so, in addition to tailored questions for each cancer type in each stage, we actually included the image of the organ, and it comes from the diagnosis section and how the cancer type, according to the top medical illustration folks is showing in most people, right? So you have this nice coupling of recommended questions and opportunity to add your own questions, as well as the organ in which the cancer is located so that hopefully, people print it out and take it with them, but the idea is to at least prompt the individual to ask the doctor, "Where is my cancer today? Where is it likely to spread?"They have a much better sense of what's going on in their body. I'm going to tell you a story, I talked to really early on, a stage four lung cancer patient.
She's amazing. She's a thriver. She's doing incredibly well. And I was showing her what I was thinking about doing and she said, "Oh my God, I was showing her the lung cancer version," and she said, "I never really understood what they were talking about. All those times, they were talking about my lobes." And I said, "What?" And she was kind of laughing and crying. She's like, "Oh my God, it makes so much more sense now, Risa. You have to do this."Today, it's static, so you can add questions and whatnot, but longer term, is there a way actually to let patients or their nurse actually annotate on that page for them so that they can actually go home with something even a little bit richer.
Rich:
What I think is really interesting is, this brings into context that often a lot of these pharma and biotech companies, they don't necessarily convey. Is there a better way that they could communicate the science behind their treatment options upfront, not just saying, "Oh, works on the lobes," is there any change in particular, that if you could make a change now, what would it be in that space, with how they convey the information to patients regarding diagnosis, treatment options?
Risa:
So from a pharma perspective, I think they just need to think about it more holistically. When you're trying to bring somebody into this trial ... I mean, I've been toying even with proposing we changed the word clinical trial because it sounds a little scary, right? I think there's a lot of information gaps.
I think that we need to help the pharmas understand they need to communicate the benefit to them as the individual, while they obviously are the folks that are altruistic about participating in the clinical trial, they need to do a better job of communicating that it's for their own wellbeing. We're going to get them to the best place possible. I think we need to help them convey ... really understand the different subpopulations and how to talk to them and the nuances between them, but the piece that I think that they really need to convey is that this idea that you're still getting the standard of care, but we think we might have something better in advancement that's going to even get you to a better place.
I'm just not sure that that's coming through in the way that it could, as well as the idea that you're going to actually get extra support ... Cancer is scary, it's terrifying, but you're actually going to get extra support on all fronts by participating in the process. We talked a little bit earlier if they could at least provide some financial support for the treatment itself, the drug itself. Obviously, I think that would be a huge driver, but I also think they need to spend some time with some of the different community organizations and making sure they have diverse voices talking about the benefits of the clinical trial that they're trying to promote within the communities... the message shouldn't just be coming from the pharma company.
They need to find other individuals, advocates within the communities to tell the story of why people should be participating.
Rich:
How do you think cancer patients are thinking about clinical trials? When they hear that word, what goes through their mind, and what did they assume that may or may not be correct?
Risa:
Yeah, I think people still think you're getting it like a placebo. It's either you're in or you're out. I think people view it more as a last resort, if there's no treatment available, right? I think the bigger challenge for the pharma brands is getting the oncologists to talk about it earlier on. I don't know what the split is, but I think it's still, to a certain extent is for where we don't have much many treatments that the clinical trials are coming into play as opposed to some of the earlier stage cancers.
Rich:
When you say that getting those oncologists, starting the conversation early, we found personally when patients are looking for oncology clinical trials, that the oncologist is the one driving that. The patient isn't necessarily the one in the driver's seat. It's more so, "We think this could be a good clinical trial for you based on available treatments."
Risa:
Right.
Rich:
Cancer overall, there's hundreds of thousands of patients diagnosed per year. We still don't really see that as a leading search condition for us, so we're very curious, how do we get patients empowered, to start that conversation with oncologists, maybe getting clinical trials in their mind a little bit earlier. I didn't know if you had any ideas on that.
Risa:
No, I think that's just it. I don't think it occurs to people that are diagnosed with cancer that's early on, that they should be exploring clinical trials. I think it's the later stage patient and probably being driven by the oncologist that the idea that a clinical trial might make sense to them comes into play. My goal with XpertPatient and putting it onto every cancer page and stage, whether it's early or late, is starting to build some awareness around that, right? So it probably doesn't even occur to people if they're stage two breasts that a clinical trial might make sense for them, but the first thing is seeding it and letting them just play with the tool even, to see, to explore and figure out, "Oh, this is something that might make sense for me."
Then, we're never going to have the answers. We're not prescribing or recommending anything on XpertPatient. We're just trying to put information out there and have people go back and ask the questions and spend the time with their doctors talking about it.
Rich:
Right, and so with these patients, these oncology patients that are willing to participate in clinical research, if that's somehow determined, do you think there's any misconceptions about these patients, about maybe that a ... someone recruiting for a study might have, whether that's a study investigator, a doctor, a pharma company? If there's anything you can clear up on that, that'd be really interesting.
Risa:
Yeah. I'm not sure they understand the information that's out there. I don't think they understand that there's really limited knowledge around it, and I don't think they are necessarily understanding the motivators. We as an industry, we talk about the greater good, a lot. That's not what's on the mind of the cancer patient, that they're trying to live their day-to-day as best they can and get to a better place, and I think some of your research were showing the same thing, right? So we need to make sure that that understanding is addressed in how the different pharmaceutical companies are talking about the different opportunities for different communities.
Rich:
And another thing that I think is a misconception that we've seen, and maybe you can correct me on this and maybe I have a misconception, but one of the leading criteria for clinical trials is the molecular status, if they're expressing a certain mutation, if they've had a certain stage or something like that. Do you think patients have that information? Do you think they're given information on their mutation status or is that something that the oncologist might not give a patient unless it's requested?
Risa:
I think they probably have it. Sorry, in their records, they have it, and depending on the level of engagement from the patient, they may or may not know, like someone in my family had breast cancer, incredibly engaged. When I asked her about her subtype, she wasn't sure. So I think that's too much of an ask. I don't think people are there, most people, the average individual is there or they're not going to know. Yeah, I don't think they're there.
Rich:
And that's just super interesting because I feel like ... to sort of hammer home what I just said, trials are really, we're looking for these new niche patient populations, new molecular drivers, new treatment targets, but we just talked about how ... without the oncologist initiating, how is a patient going to find a clinical trial for their one in a million mutation? I just find that there's just a huge unmet need there, where there could be the perfect trial for them, but they don't even know that they're eligible for it.
Risa:
That's right. I mean, I'm hoping at least with the tool and bringing your tool to the forefront on xpertpatient.com, that we're going to have at least more people playing with it, and perhaps you're right. Perhaps the questions in there will trigger them to go ask more questions or even look at their records, so that they can come back and complete the questionnaire. Yeah, I mean, cancer just in general is so complex, just at the most basic level. Now, getting down to the molecular level or the biomarker or the risk factors in different communities, it's super complicated.
I think there's just an education gap. I think we need to help people understand really what a clinical trial is and what it brings to them. I think that's the biggest thing that we all, as a community, need to do and understand then also, the motivators of the subpopulations and make sure that the right people are talking to them about it. It might not be the oncologist. It might be somebody else that went through a clinical trial from that community. I think to really drive participation in these communities, it's through the community itself and through advocacy.
There's a ton of people working towards this, and we just need to get the right message out there, and we need to get the different pharma companies, the different organizations partnering with them to make sure the right message is coming out.
Rich:
That actually leads really well into my next point: A huge issue right now with clinical research is that the populations of these trials do not match up with the populations that are seen in the world. An example here is that most breast cancer clinical trials, for instance, have about 90%, 95% White participation. How do we change that?
Risa:
Well, that's just it. at the end of the day, it's about recruitment, right? We need to step back and the industry, the pharma companies need to spend the money and actively partner with these organizations, and create the content, culturally sensitive educational material and resources so that you've got the right tone, the right message and then, go and do the recruiting. I think it's just ...
I think you're starting too far down the pipe. You've got to go back, understand what the barriers are in more detail, talk to the leadership within the community, and then create the content and the education materials and the messaging to then go out. And when I say go out, you've got to figure who the right voice is as well. You need to have the black and brown representation as the leaders, and helping the community understand what's going on.
There's still a lot of trust issues, so you've got to break down trust by working with people that they trust and being transparent and being really honest about what clinical trials are and aren't and trying to move forward.
Rich:
is there any other issues that you can really identify for those communities? I mean, trust, number one, I would've to say, where there's a lot less faith in clinical trials due to historical experience. Are there any other challenges you see with those communities' desire to participate in clinical research?
Risa:
Well, I would say if we could marry breaking down the financial barriers with access to clinical trials. And financial barriers being both the treatment and the life care, the everyday realities of life, then we'll have an incredible amount of success. Because then they're getting the best care they can possible, both from a medical perspective and emotionally, and it's helping their whole family. If you can't pay for your medication... You're going to put food on the table first. So we've got to solve for it all, especially in some of these other communities. And we've all seen the numbers around financial toxicity and devastation. we need to solve the financial component, not just from a treatment perspective, but from an everyday life perspective as well for some of these communities and then we'll have a lot more success.
And if you go to XpertPatient and you look at how I'm comparing the treatments, the first thing I'm saying is, "Here is your financial support from the family reach and the cancer cares of the world. And here is the phone number and email and link for the number for Merck patient support, Pfizer patient support, ACI patient support." Because if people don't feel like they can pay for their treatment, they're not going to go for it.
Rich:
Yeah. And it's just shocking to think about with that number 20% just how much goes unutilized and if people are aware of that and what steps have been taken to make it less complex. And that's why it's so good that XpertPatient is there to provide that breakdown for them because like you said, people aren't comfortable asking questions and I can't even imagine how many lives have been positively impacted just knowing how much their treatment would cost or just the resources and feeling that there's a supporting hand. So one of the things I really want to wrap up this more pharmaceutical industry sponsor, CRO related section is with anything related to clinical trials, cancer, is there anything you'd like to share to those companies? If you could change one thing about either cancer diagnosis, cancer treatments, anything?
Risa:
I think we need to start looking at the patients holistically, and I think that we need to offer and make sure patients are aware of their different treatment options, including their clinical trial options. That way they can start to think about what's the best treatment option for them given their life need and their life goals. We need to think about people with everyday goals. A woman told me her dad's only goal was to be able to go to the opera. He was a late stage, he didn't want to be tired, he didn't want to be so fatigued he couldn't go to the opera. That's a goal. So he talked to his doctor with her and they worked on a plan that he wouldn't be so fatigued he couldn't go to the opera because at the end of his days, that's really how he wanted them to spend his time. We need to start treating people and thinking about people like people, asking them what their life goals are and then connecting with them in a way typically not done today.
Rich:
I think that's incredible. And I think that we've had a really wide ranging chat today, ranging from everything from sponsors to patients, to everything in between, including some personal experience. Is there anything else you'd like to share to the listeners?
Risa:
I would just add that, thankfully, in the last decade there have been so many advancements in cancer care, in cancer treatment. Unfortunately, from a cancer education perspective, there's been really little advancement. And that's why we launched XpertPatient.com. So now that we realize that, and now that we're adding the clinical trial piece into the mix, because we want to make that more readily accessible, the trick for all of us is to help people navigate all these different options we talked about, all these different options... So that they can really find the best treatment option for them. And it might be today's standard of care, and it might be something different. It might be something that's coming up next year, but we need to help people navigate what's available today, what's on the short-term horizon, and even what's coming down the road, so that they can figure out what makes sense for them.
Rich:
And with that, I just want to say, before we wrap up this podcast that, I think it's incredible that you launched XpertPatient. I think it's amazing that there are resources now for patients that did not have much before, giving people information, especially when there's so much confusion. One of the things that I'm taking away the most from this call is that 20% of all financial aid for patients, only 20% was utilized... So I think that just speaks to how important XpertPatient is in the world. I'm personally grateful that you launched that for patients out there. And we are incredibly lucky to have you on the podcast today. Thank you for being on Talk of the Towne.
Risa:
Thank you so much, Rich.
Rich:
All right. Take care everyone.
