Episode 31: Pam Cusick, SVP, Rare Patient Voice

Episode 31 June 20, 2023 00:44:32
Episode 31: Pam Cusick, SVP, Rare Patient Voice
Few & Far Between
Episode 31: Pam Cusick, SVP, Rare Patient Voice

Jun 20 2023 | 00:44:32

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Show Notes

"What can I contribute that my doctor can't contribute? And that's a real 'a-ha' moment when we share with them how they're the experts in their condition and they know more about the everyday kind of what they go through than their doctor even would because they're not with them 24/7." - Pam Cusick, SVP, Rare Patient Voice

Biorasi's Marc Gas welcomes Pam Cusick, SVP at Rare Patient Voice, to the Few & Far Between podcast for an episode focusing on the power of rare patient input across the clinical trials industry.

Connect with Rare Patient Voice on the road in 2023 at:

UXPA International - Austin, TX - June 20-22
DIA - Boston, MA - June 26-28
Global Genes - San Diego, CA - September 19-21

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Episode Transcript

Chris O' Brien (00:16) Hello and welcome to episode 31 of Biorosi's few and Far Between podcast. I'm your host, Chris O'Brien. Rare diseases impact the lives of 300 million individuals, families, and caregivers worldwide. Fortunately, thanks to a surge in rare disease patient advocacy, these voices are now being heard. I'm here with Dr. Mark Gas, VP of Program Development and Partnerships and head of the Rare Disease Center of Excellence at Biorosi. This month, Mark had a chance to catch up with Pam Cusick, senior Vice President at Rare Patient Voice, a company that connects patients and caregivers with rare disease research opportunities. Welcome back to the podcast. Mark, tell us about your conversation with Pam from Rare Patient Voice. Marc Gas (00:57) Thank you, Chris. Yes, Pam and I had a chance to talk about the importance of the voice of rare disease patients. Believe it or not, some patients don't believe that their opinions are valuable when in fact, they are the real experts on their own conditions. So in this episode, Pam and I explore how these bridges between patients and the biopharma industry are built and the benefits of optimizing input to inform clinical trials, surveys, and rare disease support. Chris O' Brien (01:20) Thanks, Mark. I'm a strong proponent of the patient voice and clinical trials. I'm really looking forward to this one. Okay, let's start the podcast. Marc Gas (01:37) Welcome, Pam, to the IRS podcast. We are very happy to have you here with us today. Pam Cusick (01:42) Thanks for inviting me. I'm excited to get started. Marc Gas (01:44) We are really, really excited to have you. As you know, we've talked to a lot of different folks within the rare disease community from sponsors, regulators. We're really, really excited to have the Rare Patient Voice to be part of our podcast and to be heard by our audience. So it's a pleasure to have you with us today. I wanted to start this episode walking people through your personal journey to get here. So how you get involved in your career with healthcare, with rare disease to the point where you're part of the rare patient Voice and do the work that you're doing today? Pam Cusick (02:20) Sure. So I have been in research in some capacity for my whole career. I started out doing research in college with one of my professors and sort of moved on to do a little bit more down the line than in graduate school as well and really liked the process, liked doing all kinds of social science type research, focus groups, interviews and surveys. And I wound up getting a great job right after college or after grad school with a healthcare government contractor. So we worked all on public health studies for CDC and NIH and FDA, and I focused mostly I worked with doctors sometimes, but most of the time I was working with patients and kind of the how do patients react to public health campaigns, what kind of messaging should we use and which messages work best with them? So that evolved into working with other companies and then at some point I started working for a pharmaceutical market research company in that place. We were working on the consumer side of things. So working with patients again, same thing, messaging, but really for pharma rather than public health. And that's where I met Wes, who started Rare Patient voice. Pam Cusick (03:29) So that was ages ago in the we went off to do our other things and it worked in different companies. And about ten years ago he started a Rare Patient Voice. And I said, well, when you need somebody, let me know. And about seven years ago he waved the flag and said he needed some help and I came on board and it's been great ever since. This is a really neat way to kind of the confluence of working with patients and with clients who need to work with patients. Sometimes they don't even know they need to work with patients. And that's the challenge that I had to find those people who need to work with our patients and help them to connect. Marc Gas (04:08) I don't think I've ever had a chance to speak with somebody involved from the patient side for such a long period of time. That brings a lot of value to the work that you guys are doing today with Rare Patient Voice. But I'm sure that also all that experience from the different perspective that you just mentioned, different initiatives sort of create that solid foundation on why it's important to have the patient perspective into healthcare, into research, even when some people may not even know that they need that connection with the patient. So can you explain a little bit on when you realized or what was the path to say, look, the connection with patients is extremely important not only on how they perceive research, but also on what they can provide to the research community and the healthcare industry as a whole. And I'm sure then we'll discuss how that leads into the work that you guys are doing today with their patient voice. Pam Cusick (05:02) Sure. So in the public health sphere, that was really where it was all focused on the community and people with different disease groups. And so that was very clear path to you have to talk with patients, you have to talk with the consumers who are in that, whether it was a group with HIV or you're talking to patients with diabetes and trying to get messaging out to them. That was very clear. But it wasn't until the pharma was really able to advertise to patients directly. And that's where actually Wes and I both were asked to join this company because we had both worked in consumer, that public facing side of things. And the company that we worked for was very well entrenched in Hcp research, but they didn't know kind of how to focus on and how to talk to patients. So that's where we came in, I think from the one interesting thing is what we hear from patients. So when we go and we invite them to join our community and they become part of a rare patient voice, we do that at a lot of events. So we'll go to the National Hemophilia Foundation conference or a national sickle Cell conference and meet those patients and a lot of times they'll say why would someone want my opinion? Pam Cusick (06:15) What can I contribute that my doctor can't contribute? And that's a real AHA moment when we share with them how they're the experts in their condition and they know more about the everyday kind of what they go through than their doctor even would because they're not with them. 24/7 so we have some several instances where I can think of one woman who she said that she didn't really know that what she had to say would matter. And once she started to participate in a few studies she really kind of found her voice and she became an advocate and got very involved in her disease area because she had no idea. And as a researcher and having been a researcher forever, I know the value of research and I know why it's important to include all of the stakeholders. But a lot of people have never really been exposed to research. And I think for now, where having gone through COVID and people hear a lot about clinical trials and things like that or they did, maybe there's a little better understanding. But for the most part, your general population doesn't really understand research and how they can impact it. Pam Cusick (07:19) And then again to the example that I provided. Once they do become involved, they really feel that they provided value and that they're valued. And it can be sort of sounds funny to say this like a life changing experience for many people, because they have a voice, but they haven't used it, or they didn't know that someone would want to listen to it. And so that's a really beautiful thing. Marc Gas (07:42) Yeah, no, I couldn't agree more. So something that I think it's really interesting that you mentioned is that how was that evolution with involving patients over the years? Because it looks like maybe early on in the 90s it was more sort of like a social awareness to people, right? Like hey, there's this disease. Be careful. These are best practices to avoid it or whatever it may be versus now going the other way around and just get their feedback to improve research or to improve clinical trial design or to even help pharmaceutical or biotech companies develop their pipelines and develop their whole commercial strategy and research strategy. How has been that evolution, I guess on involving the public, not only from the regulators or companies to the public, but now from the public to the companies and to the regulators. Pam Cusick (08:30) Part of it is it's mandate to include patients in research, in some types of research, right? So sometimes companies do it because they have to, but more so, I think we're finding on the pharma side, they're realizing the value of hearing from patients, hearing from that stakeholder, so not only the physician who would prescribe the drug, but the person who would use the drug. And so that we've seen a lot more in the last five or ten years of pharma, including patient engagement teams or somebody on their whether it be commercial side or on the medical affairs side, where they're getting patient input kind of at grassroots and then all along the way. So not only once a product is coming to market, but when they're looking for what sorts of things would a patient need, or if it's a device manufacturer, what sort of products might they need to make their lives easier. And so they're getting that at the formative level and hearing what patients need, hearing what caregivers need, and then getting their input at various stages throughout. And I think it's, as companies see kind of the benefit of doing that early and often that ends up for them, it ends up being a good product that sells well, that's prescribed often that patients ask for or a device that people buy because it works better than others. Pam Cusick (09:56) And they see the benefit of including that early patient input. So that it's not just I came up with a great idea, let's create this thing and hope people like it. They're really using the patient input in the beginning to help do that. And I think that back again, I mentioned the couple of times, but at that time doctors or we couldn't advertise right, we couldn't advertise to patients about any types of drugs and what the benefits or the risks might be. But I think to understand what was happening prior to that was that we would ask the doctor, what do you think the patient wants? Well, the doctor knows what just based on that period of time that they talk to a patient, oh, sure, they need X, Y and Z, but a lot of times there are side effects that might be worse than some of the things they're currently experiencing. So I think that I gave a long answer to a short. What I'm going to sum up is that it really is when as companies are seeing the benefit and their products are better and more well received by patient groups, that benefit, which translates into higher dollar figures and all that ends up being a good thing for them. Pam Cusick (11:06) And they're also helping the communities, the patient communities, which then gives them goodwill. Marc Gas (11:11) Yeah. And as we often see, it needs to be something that benefits all parties involved. Right. I think the patients benefit or feel the benefit of being heard and understood, whether it's from how the clinical trials look like or how ultimately things are marketed, or how are the awareness that's raised in the communities and so on. And then same for the biotech pharma companies that they understand better what the patients need, what the patients want, whether their journey is like and whether they're willing to do or not do for a certain treatment or for a certain product. So that makes a lot of sense. So all that experience, always close to the patient side, leads you to being part of Rare Patient Voice, right? So how is rare patient voice created? What's the mission of the organization? Tell us a little bit more about the organization. Pam Cusick (11:58) So it evolved really out of that prior work. The company that I mentioned, that pharma market research company, where we were asked to create a panel of patients for diabetes for a hemophilia study. And so Wes got the project and said, okay, well, what can I do? And thought about, okay, well, what if we go out to a patient group, we'll go out to their event, have people sign up and see how that goes. And it was a very successful project. And then some years later, another company came to him and said, hey, I heard you had this hemophilia panel. Can we utilize it? And he said, no, it's proprietary. But it got him thinking that maybe it would be a really good thing to have panels of patients that were available for everyone to do research and that those patients, their input shouldn't be just restricted to working with one group, that they could work with many groups. And so the time was right ten years ago. And he started out with hemophilia, and he went to the hemophilia conference with paper and pencil and had people sign up. And it started there. And over time, it has grown to we now have over 125,000 patients and caregivers. Pam Cusick (13:08) We're in nine countries. They're in 1400 different disease areas. But the the main point is to be able to connect patients with all opportunities to share their voices. So whether that be market research, whether that be we have some clients who want patients to do video vignettes to share with their teams of a sales team who may never have really met a patient with the disease. That they're actually selling the drug for or usability study from a clothing manufacturer who's creating accessible clothing, and they want to make sure that it works for that particular group. So it evolved really from that initial at that other company where it was a really good idea, but it was kind of cordoned off because it had been paid for by one client. So west thought, well, what if we just build the community ourselves and then any client can come to us to work with those patients, and that's really how we evolve. Marc Gas (14:06) Yeah, that makes a lot of sense. So I'm assuming that over time, you guys have been involved in a wide, wide range of activities, different nature of interactions between patients and all parties involved in research or in healthcare. What are some of those specifically, there's probably people listening to us right now that they're wondering, okay, what can I expect to see from rare patient voice in terms of activities? So can you walk us through some of the initiatives or sort of the work that you guys do with these patients and whether it's patient organizations, patients themselves? Can you walk us through that a little bit? Pam Cusick (14:41) Yeah. So a lot of the clients who we work with are market research companies that work with a pharma company or work with a device manufacturer or another type of product that is targeted to specific patients. So it may be they're invited to do interviews about their journey to diagnosis. It might be an interview or a focus group to look at advertising concepts. Maybe there's a new product coming to market and they want to talk about, hey, here are some of the side effects, here are some of the advantages. Tell us what you think about these things so that they can incorporate those into some of their messaging. It might be, as I mentioned, like a clothing manufacturer who's trying to create accessible clothing for people with mobility issues. So they'll want to share the clothing and get patients or people with mobility issues to try them on and see how they work and then provide feedback on that. One of our colleagues who has Ms and is absolutely 100% sure that his input changed a cane that he worked, he was in a research project and that they wanted to see how to improve this particular cane. Pam Cusick (15:47) And he said now they produce it with his suggestions. And so it's kind of neat to be able to see that come to fruition. Other times it'll be a patient community online as an example. So they might log in every day and kind of talk about their symptoms and how they're feeling. And that could be used by a company to say, okay, well, where could we come in and provide value? What could we create that would help this patient community? They're trying to get that everyday feel to understand what patients are going through. And it might also be a time where they're talking to a caregiver about their journey and what support they might need in taking care of, say, a child with a genetic condition that causes some issues that they might need assistance with. So it could be anything like that. We also connect patients with across a spectrum clinical trials. So if they're interested in participating in clinical trials and there's moments available to them, we'll connect them with that. We also even post clinical. We have some clients that want to look at what patients talk about or when you look at the outcome of a clinical trial, usually write it up in a very sciencey journal article or something like that. Pam Cusick (17:01) And they want to make it patient friendly. So they'll have a team of patients review and say, okay, what do you think about this? What does this mean to you? So on and so forth, to make it readable so that those patients with that condition can go back to their physician and say, this is what I learned, this is what I know. Instead of just an article that's completely incomprehensible to them, really, they could be doing so many things. We had another one that they wanted to bring an artist in to do a rendering of a patient for ad copy. So it varies so widely in terms of what they could do. We firmly believe in bringing all reasonable opportunities to them, and then a patient or a caregiver can decide if it's something they're interested in. They may not want to go on every day for two weeks online, and that's fine, but they may be interested in doing a survey, or they might not be interested in being online in a webinar, but they're happy to do a phone interview. So we try to leave that up to them. When we invite them to a study, we give them very clear details what's involved in terms of their time, what they would be doing, and then it's up to them if they would be interested in doing it. Pam Cusick (18:11) But really providing them with all the opportunities that we can is really our mission to help bring those to patients who might otherwise not know that they could be involved. Marc Gas (18:22) So sounds like you guys are very, very flexible and inclusive when it comes to what can we do to either capture the patient voice, connect patients with other groups, or help facilitate that interaction between different parties or whatever the outcome is, but just making that connection in several different forms, right? Chris O' Brien (18:49) Hi, this is Chris O'Brien, host of Few and Far between. We'll be right back with this episode in a moment. I personally want to thank you for listening to our podcast. Now in our third season, it continues to be an amazing opportunity to speak with some of the top thought leaders in the clinical trials industry. If you're enjoying this episode, please leave us a review on Apple podcasts. It really helps people discover the podcast. And don't forget to subscribe to Few and Far Between so that you never miss an episode. One last request. Know someone with a great story you'd like to hear me interview. Reach out to us at few and far [email protected]. Pam Cusick (19:22) Thank you. Chris O' Brien (19:23) And now back to the podcast. Marc Gas (19:30) One thing that I'm curious to hear about is obviously, especially the last 510 years, maybe a little more with the increased use of social media and Internet. That's something that sort of facilitated people to get access to information and also to create groups, communities you see a lot that especially in rare disease or certain diseases that have a lot of movement. How has that changed the way that you interact with patient groups? I'm assuming that from the 90s with how you were saying, going to a conference with pen and paper and signing people up to now things have changed tremendously, not only on how you interact with them, but also on how informed people are. Because I've come across some parents or caregivers that make research, like incredible amounts of research and are extremely well informed even without a scientific background of any kind. So I've seen incredible things out there out of need, right? And obviously because of the tools that exist nowadays. So how has been that changed over time and how you guys have evolved and how you use technology in today's world to facilitate those connections. Pam Cusick (20:41) So, funny, you mentioned the pencil and paper. So we still go to events and people still can sign up on paper and pencil. They also have the option to go online and do it too, but some people prefer to just put that information on the paper. But for us, the way we use social media is kind of unique. For a research organization, we have a patient advocacy team and they have connected with referral partners all over the world. So those are some of smaller advocacy and support groups that are online. I might be a mom who started a group or a group of parents who are just looking for other people in that disease area to communicate with. So our patient advocacy team reaches out to these groups to see if they would like to become a partner with us and refer people. By doing that, I mean they'll post about rare patient voice and put a unique link and then when anyone signs up through that link, we donate $10 back to that group for each person who signs up. So it's kind of a passive fundraising effort for some of these smaller organizations, which is great because they're often run by, they say like a mom or dad and on a shoestring budget, earning a couple of $100 just to post and refer people over is great. Pam Cusick (21:58) We also, when people do participate I don't think I mentioned this when they participate, we pay patients $120 an hour. So that's an opportunity for their community members to not only share their voice but make some money for their time, which is often very needed. They're having to pay all these exorbitant copays and for things that aren't covered by their insurance and so on. So it's a nice way to give back to the patients as well as the referral partners who help us. So using social media, we connect with a lot of these partners. We'll post on our Facebook page about studies that are open and also on Twitter and Instagram about those studies so that we're trying to reach a broader audience with those opportunities. And then when people do sign up, we want to make sure that they have as many opportunities as are right for them. So we make sure that we have all of their information. Is aligned that they've provided us with their disease and maybe some medications and some other specific information so that when we have a client who comes to us, we know who to target with those invitations. Pam Cusick (23:13) Social media is it certainly made it easier for us in a lot of ways, but it also adds a little extra, can add a little extra work. Because as with anything, there are always people who are trying to game a system and sometimes people do try to sign up who I think this is bad karma, but they don't have the disease that they say they do. We work with an online AI tool called Research Defender that screens out people for a variety of reasons and matching their IP in their country and all sorts of things. And then our patient advocacy team goes to great lengths to go through every single profile and identify where that person is and does their disease, match their drugs, and all of the kind of little things that you might notice that would be quirky, that might raise a red flag. And if there's a problem, we'll call and verify information with that person because when we share opportunities, we want to make sure that they are for the right person and that that person will provide valuable information. If they don't have the disease that they say they do, then obviously that would not be a good fit. Pam Cusick (24:22) So we're very cautious about that and it takes a little extra time when people sign up with us to go through all those levels. But it's important for us and important for our clients to make sure that we do that. Marc Gas (24:35) So I think that adds a level of credibility, right? That whole validation that you do of any level of interactions, whether it's from a patient or from another organization, I think it's important to do that, especially if then you're going to take that information provided by the patient and use it for something as relevant as research or that type of level of critical information. One thing that I think it's important also for people to know looks like you work with organizations but also individuals, right? So it looks like almost sometimes people think that unless they have a solid infrastructure around them or they have a group or they have something already built, no one's going to listen to them. But I just wanted to emphasize to folks out there that even if it's just you from your home that are curious about clinical research or about your disease or about how to connect with other people that may have maybe in a similar situation, you can still reach out to organizations like yours, and you guys will listen to them. We'll facilitate any interactions. We'll help in their journey if you can, or we'll give them tools or connections to maybe other people that are in the same situation, you'll gladly do. Marc Gas (25:43) So whether it's a group of ten of 100 or of one, right? Pam Cusick (25:46) Absolutely. We are happy to. Some of the smaller groups that we work with, maybe there are only six people in the world diagnosed with that condition. They're just as important as like you're saying, a group of 10,000 patients that comes to us. We have a lot of people that we find by going to events in person and they just happen to have that condition. And they may just be newly diagnosed and don't really have a support network, but joining us, they get opportunities to talk with a moderator. Or maybe they're in a focus group and they actually hear there are other people with this condition having the same challenges. Or maybe they'll find some tools and resources through some of this research. And it's a really nice thing. So we are happy to work with individuals as well as large groups. We want to provide this opportunity to everyone who is interested in participating. Marc Gas (26:43) Yeah, that sounds great. So a little bit ago you mentioned that obviously after the pandemic there's been an increased at least knowledge or people have heard about clinical trials probably more than before. Right? Obviously it was all over any type of media, clinical trials, the vaccine. So people that pre pandemic probably never even heard of a clinical trial before now at least have heard about clinical trials. Not sure if you dig a little deeper if it's accurate or not, information that everyone received, but that's another issue around social media and technology in today's world. But I wanted to jump into the clinical trials theme now because in our industry, especially in rare disease or in disease with less patients, clinical trials are extremely important to develop new. Therapies potential for unmet medical needs and the awareness and the participation of these patients is extremely important. And so I wanted to get your perspective on the work that you guys do around clinical trials and connecting patients to those clinical trials of working to research in general. Pam Cusick (27:51) Sure. So we started connecting patients with clinical trials just a few years ago. It was for us, it's the same process, right? We tell them what the research is, what the time they might ask to invest and then if they're interested, they can move forward. And we realize by talking to some clients and groups that we work with, that these are patients that they want to participate, they want to share their experience, they want to help, even if it's not something that's going to help them now. They can help someone down the line and they want to be part of that. So for us, giving them that information and sharing the opportunities is really important. There are so many clinical trials out there. If you look at clinicaltrials gov, there are so many things that people could participate in, but that even though there's probably a little more understanding or awareness, I guess, of clinical trials, there are. Barriers to participating in them, right? So there might be one that's perfect for me, but it's across the country and now how am I going to get there, how am I going to take care of my other kids? Pam Cusick (28:52) All these other things kind of crop up as issues and to a certain extent decentralized trials help with that. When they can be done in that type of setting works fine. And there's patients feel different ways about that. Some patients say sure, come to my house and other patients are like do not show up at my door. So everybody has a different feeling about it but the option is good. And then there are also organizations out there that I was unaware of that help with support, they'll help figure out the transportation. If you've got to travel across the country, they'll help book your hotels and get you an accessible if you have a wheelchair, get you an accessible transportation from airport, all of those things that make it a little easier. And I think that to me is a game changer for patients because otherwise they may not be able to they just might not be able to participate. And when you're talking, as you had mentioned, when you're talking about small numbers, you don't have a lot of latitude. If you're going to have a statistically significant result, you have to have several people there to try it out, right? Pam Cusick (29:57) So I think that there are some barriers for patients, but the other kind of we did a little internal study I may have mentioned before, but where we asked patients where they want to learn about clinical trials and the biggest percentage wanted to learn about them from their doctor. Which is great if your doctor knows about the clinical trials in your disease area. And a lot of general practitioners may not know a lot about rare disease and then by extension, may not know that there are even existing clinical trials in that area. So that makes it a little bit harder to get that information out because not everyone wants to look at clinicaltrials gov and it's not the easiest thing to work with. So that's a bit of a barrier and then if what I'm going to trust is my doctor telling me and my doctor doesn't know about it, I'm never going to learn about it. And so that's kind of a big area that I think somehow needs to be that gap needs to be closed because I don't know exactly how to do it other than getting more information out. There are so few patients in a rare disease area and if we're not telling them or they don't know about a clinical trial because their doctor doesn't, that's a huge barrier as well. Marc Gas (31:12) It's interesting the point that you bring, because sometimes when we talk about clinical trials and increased awareness or appeal to clinical trials, we always think about how we, as an industry or companies or groups, can go directly to the patients. But then you hear from the patients that they want to actually hear from their physician, not from us. Right. So we have to figure out a way to raise awareness in all aspects of it with physicians that may be not so involved in research and then also with patients. But close that loop or close that gap looks like a very important piece. So I'm sure you've seen a lot of different challenges when it comes to clinical trials, clinical trial knowledge or clinical trial perception from the public, from patients. Right. So what are some of those that you encounter more often than not and how you guys help navigate or create that awareness on what actually is a clinical trial? What are you going to find if you enroll in a clinical trial? What tools do we have to help you find one? How do you guys manage that with the patients? Pam Cusick (32:18) So we try to have as much information upfront as possible for them so where the trial is, how many visits they might be expected to be there, and all of those details so that they understand the commitment to it before they even click a link to go learn more. Because like anybody, we don't want to waste their time if it's something that they can't manage or it's too much of the time commitment, we don't want them to go down a rabbit hole for no reason. But we do try to make we have some information on our website about clinical trials to help patients understand what that is. The best education on that would come from the site where they have greater detail, they have more robust information about what all of the would be expected, what sort of tests might be run, how many days they might be expected to be in the hospital, and so on. But it's, you know, for us, you know, one of the funny things is so, you know, as I had mentioned, with market research, we pay patients $120 an hour, but with clinical trials, you don't do that. Pam Cusick (33:23) So explaining that this is a different type of research and that you wouldn't be compensated for your time, but there are often programs that will compensate you for your travel and so on and so forth, making sure that they understand that difference up front, because we don't want it to feel like a bait and switch, right? It's a totally different type of research and the benefits and risks are different and all of those things. And that's usually very well outlined on the client side of that. For us, it's explaining to them as clearly as we can, this is what it's about and this is what type of commitment it would be from you. And if they're interested, they can make that decision. Marc Gas (34:05) So you not only provide the general knowledge about trials, but also facilitate potentially finding something that would benefit them for their specific disease or for specific condition. Because as you said, yeah, clinicaltrials gov exists, but it's not the most user friendly or best platform. If I was a patient with no scientific background and I wanted to be part of a clinical trial, I wouldn't even know where to start. I mean, I would probably just go to Google and put clinical trials in my position. So having a partner like you guys that can help navigate that and find options and explain the difference between different options because again, finding a trial is complicated. But I can even imagine if I'm a patient and I find four, then what do I choose and why? It's another level. So I'm assuming you guys also help navigate those type of situations where a patient may have different options or may want to find a trial. Can you support that as well? Pam Cusick (35:02) So really the way, I mean, on our end, the way it works is a client comes to us or we find a client who is doing research in a particular area and they'll share what it's about and we all share that with the patient. We're not experts in kind of helping them navigate the difference between those trials, but again, providing whatever they're bearing with us on the trial side, sharing with the patient what the benefits are or what the project's about or the trial is about, and helping them to look at that one option as determine whether it's good for them or not. We would never want to since we don't have medical backgrounds necessarily to give them this is a better one for you than this one, but they can go talk to their doctor which may give them additional insight about whether this is appropriate for them or not. Oftentimes there are multiple studies in a particular area, particularly around COVID there's this, that and the other. There were a lot of different things going on but you might be looking for people who've had the vaccine and had diabetes or who had vaccine or who had diabetes and didn't have the vaccine. Pam Cusick (36:11) Do you know what I mean? So there are a lot of different choices and our way of looking at it is we try to provide as much clear and upfront information to them so they can make an informed decision that makes sense. Marc Gas (36:24) With all the contact with patients and involvement in conversations with patients caregivers, advocacy groups, I'm sure you see a lot of different things that can be improved from the perspective of how we get people more engaged, how we facilitate that connection. How we get physicians more equipped? Physicians that are not very involved in research. How we get patients more equipped? How we bridge these gaps? So what are the things that you believe are critical over the next going forward to improve just the whole ecosystem, right? Especially in research. So I'm sure there's a lot of things that you guys are working on that can contribute to that. So what are some of the critical things that you believe are going to be key going forward to improve just the general ecosystem? Pam Cusick (37:10) Gosh, that's a big question. So I think in terms of clinical trials, one is that awareness piece, right, to help doctors across the spectrum, not just specialists, but where they can communicate information about clinical trials to patients, whether that's if you have my chart and maybe if someone has a diagnosis, somehow the my chart information pops up. Oh, here are five trials that might be appropriate. I don't know that that can even happen. But you know, the awareness on the kind of the grassroots end where I'm going to my general practitioner and I trust that person, I've gone to them for 510 years. I want them to be able to share that information with me. I think that is one area that could be improved significantly. And there probably are all sorts of AI tools that could come into play. And if we can connect those physicians with that information, it would help patients and I think that would be fantastic. So awareness is a big piece. I think the other thing in terms of trials is making sure that people understand or that I guess this would be on the client side, that there are services that can support patients and help them get to trials and take that stressful piece. Pam Cusick (38:28) It's already stressful enough. They have a terrible illness and they're struggling day to day. But then to figure out how they're going to get to the site multiple times, you not only want them to enroll, you want them to keep coming back, right. So to make people aware of these companies that can provide the support services to make it easier for not only recruitment, but retention, and to help patients to make it a little easier for them to stay in a trial. And I think that is another piece that's really missing. And then for patients, as I had said early on, they don't always know that they can be part of anything. Still, we have a lot of feeling that, oh, if my doctor said it, I should just do what my doctor said and maybe not. Don't want to test the status quo, but allowing patients to realize that their input is important, that they are experts in the disease that they have, and that they should share their expertise. Because a doctor isn't going to know that I can't get out of bed for 15 minutes, although I try, or that I'd love to have a cup of coffee in the morning, but I can't raise my hand over my here until middle of the day. Pam Cusick (39:41) It just isn't something that they're going to know about because when I go to the doctor, that's not the thing I'm focusing on. So I think getting patients understand that they can be part of all types of research and share their voice, share their journey, share their experiences. It could help them, but it could help their family members. It could help other people down the line. And what a beautiful thing that is be able to recognize your voice. And I think that that awareness is something that we are trying to share with communities because there are a lot of opportunities, I mean, for as many studies as we do, and we have probably 250 of them going now. There are some that we can't fill, we can't find the patients for, and they're out there, they're out there somewhere, but they don't know. They can be part of research. And so that's another kind of gap. I think we need to close to let the patients know their voice is important. Marc Gas (40:38) I couldn't agree more. And I think this last message is extremely important to get it out there, to not underestimate the importance of their experience and what they've lived and what they can tell people about things that they would improve or change or that they wish they had. When I talk about patients or caregivers or people in this side of the spectrum of the research, I always say if you've ever had a moment that you thought, I wish someone had thought about this, or I wish someone would have put this in place, go and tell somebody. Because the only way they will think about it is by you sharing your experience. So that's how important their voice is, right? Like if you're a caregiver, you're thinking, oh, I wish someone had come up with this before, then share it. Because unless we share it, someone may come up with it down the road, but you're going to for sure accelerate the process to that. So we need to encourage that participation, talking about participation and people providing their feedback, their experiences. How can folks out there connect with you and with your organization? One of them we were just talking about is attending some of the events where you're at, taking the pen and putting their name down. Marc Gas (41:50) Where can they find you, how they can get in touch with you. Pam Cusick (41:53) Okay, so they can go to our website, which is rarepatientvoice.com. There is a section for patients and they can learn all about what we do and they can sign up there if they're interested. We also have a part of that on our site that lists different events where we're going to be. So if there's an event near you that we are going to and it says Find us in the community, you can come meet us at an event and sign up on paper and pencil, like back in the day. Or reach out, happy to connect with people on LinkedIn or send me an email, pam [email protected] and I'd be happy to answer their questions. Marc Gas (42:33) Yeah, awesome. So I'll encourage everyone to go visit the website, reach out, connect with Rare Patient Voice. Share your experience. Ask for any information that you may need, check out their events if there's anything nearby that you'd like to attend. And reach out to the Rare Patient Voice team because, again, everyone's contribution to this is extremely important. I think you guys are doing a tremendous amount of work just connecting all the different parties, facilitating information, and just making research and healthcare better with just ensuring that everyone can participate. Everyone's voice is heard and by that just making the outcomes better overall. So thank you again for joining us today. It's been a great, great, great, I think, conversation I think a lot of people will find interesting and will be very curious about the Rare Patient boys and what you guys are doing. So I hope a lot of people reach out and connect. We'll see you all in the next episodes. Thank you very much. Pam Cusick (43:28) Terrific. Thank you, Mark. Marc Gas (43:39) Thank you for listening to the latest. Chris O' Brien (43:40) Episode of Few and Far Between. Our podcast is now available on Apple podcasts and other major streaming services. Please take a moment and leave us a user review and rating today. It really helps people discover the podcast and we read all the comments. Those comments help us to make Few and Far Between better and better. Also, be sure to subscribe to Few and Far Between so that you don't miss a single episode. Got an idea for a future episode? Email us at Few and Far [email protected] or contact us on our [email protected]. I'm your host, Chris O'Brien. See you next time.

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