Unlocking The Rare Patient's Voice With Pam Cusick


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Episode Overview:

"Unlocking The Rare Patient's Voice With Pam Cusick" is a captivating podcast dedicated to shedding light on the experiences of individuals grappling with rare diseases. The episode offers poignant discussion that delve into the challenges faced by patients, caregivers, and experts alike. Through heartfelt storytelling and insightful conversations, listeners gain valuable insights into the hurdles of diagnosis, treatment accessibility, and the power of advocacy. With Pam's empathetic guidance, the podcast serves as a beacon of hope and empowerment, amplifying the often-overlooked voices within the healthcare sphere and fostering a deeper understanding of the rare disease landscape.

Additional Resources:

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Skot Waldron (00:01.078)
Hello, Pam, my friend, how's it going?

Pam (00:03.706)
So great, thanks for having me on.

Skot Waldron (00:06.134)
Good. It's so good to have you. This is, uh, we've had many interactions over the past little bit here, and it's about time that we have this type of interaction so that my audience can learn about you and the cool work that y'all do.

Pam (00:21.027)

Skot Waldron (00:24.066)
So tell me how you even landed in this spot of where you are right now. Like what brought you to this point in your journey and did you guess that this is what you'd be doing right now?

Pam (00:39.106)
No, I did not expect this. So I have been my whole career in doing some sort of research. So communications research, public health research. And some 25 or so years ago, Wes and I, Wes who started the company, worked at a pharma market research company. And we were working on direct consumer market research. So.

We did all sorts of interesting work and he got this idea that, wow, maybe, you know, based on one of the projects that he worked on, maybe there's an opportunity for a patient panel, a patient community to contribute to research. And there really wasn't something like that. So fast forward a number of years to 11 years ago, he started the company. And at the time, I kept, you know, we had stayed in touch over the years. And I kept saying, well, you know, when you need somebody, let me know.

and eventually he needed me about seven or so years ago. And I started working with Rare Patient Voice. And honestly, I didn't, I mean, I knew what he did and what we were doing, but I didn't really realize how big it was gonna get and how cool it was to do this job.

Skot Waldron (01:56.726)
Yeah, you have not been around too long and y'all have grown quite a bit. Um, cause you're not just in the States anymore. Right.

Pam (02:06.614)
Right, yeah, we are now in, we're in the US and Canada, which we've been in for, you know, the past 11 years, but we also added the UK, Germany, France, Italy, Spain, Australia, and New Zealand. And, you know, the interesting thing is giving those patients, you know, we've done this for many years, giving patients a voice in research and they contribute to all sorts of projects, you know, looking at different...

products and services coming on the market, testing devices. But now we can add all of the other patients in the other countries and give them those opportunities too, which is very cool.

Skot Waldron (02:47.062)
So why does it matter? Why does the patient's voice matter? I know it's a really dumb question, but I'm gonna ask the dumb question because I think it matters.

Pam (02:55.934)
Yeah, no, not at all. Well, interesting, yeah, we, the patient's voice definitely matters. But if you look back a number of years and probably, you know, still in some, some areas, people would always ask doctors what they thought the patient would want. And oftentimes that's vastly different. So getting the patient's authentic voice, hearing what they need, what they want, if there's a, you know, a product coming on the market and you want to advertise it to them,

You want to share it in a way that is realistic. And how would the patient see that product? How would they, what would make them want to go to their doctor and say, oh, I saw this ad on TV or in a newspaper, whatever, a magazine. And I really think this would be good for me. What makes them do that? You have to ask them. It's really important for them to be involved. The other thing is, with rare patients in particular, it takes them...

many times, you know, on average 10 years to get diagnosed. So, you know, if they can share about their journey and say, okay, well, over these 10 years, I was diagnosed with A, B, C, D, E, F, G, and then finally in year 10, I was diagnosed with a thing I really have, and they share that with, you know, with a pharma company, with a market research agency who is doing kind of background work on a patient journey.

they may be able to shorten that diagnosis time. Like people who have this condition are often diagnosed with ABCDEFG first. And then what if that now, that person can get treatment a lot earlier because a patient has been able to share their journey. There's so many ways they can be involved. We had another usability study where patients, our client was trying to develop

clothing, a clothing line, accessible clothing line for people with mobility challenges. So they sent clothing to 25 people or so and then interviewed them about how they worked, what could be done better, how could it, you know, if you're in a wheelchair and I, you know, have these jeans for you to put on, what makes it easy to do or hard to do and how can we make that better for you? You can't get that from somebody.

Pam (05:16.778)
else. I mean you can guess what they might need but you really need to talk to the people. You need to talk to the patients and that's where we come in.

Skot Waldron (05:26.85)
Mind blowing. You mean ask the actual people who are maybe in wheelchairs how they like to get dressed?

Pam (05:35.462)
Mm-hmm. I mean who would have thought right but you know lots of smart people in the world developing all kinds of things whether it's clothing or Medication or some sort of service or something but Because there's you know, very bright and creative and have these great ideas Oftentimes they think they are assuming that's what would work for someone else and when it gets down to it and you say, okay well

Skot Waldron (05:38.444)
I know.

Pam (06:05.102)
here is this app, right? So here's an app that I want, you know, everyone's gonna love this, everyone with this, you know, this condition is gonna use this, they're gonna put this information in and blah, blah. And then you go to those people who then say, yeah, I'm not gonna do that every day. It is illuminating, right? Because these bright minds have come up with something, but you really, and it might be a fantastic idea, it just might need to be tweaked a little bit so that it's...

it is usable for an individual with X condition. And I think that we have given or found those opportunities for patients. I mean, that's really what my role is, looking for all of those opportunities, looking for any and every client who is developing something that would touch a patient and saying to them, hey,

great idea, love what you're doing. Can we help you talk to, can we help you to connect with some patients so they can give their insights? And it's really gratifying because there are things that you know you wouldn't think of like after clinical a clinical study is done. There are summaries that are created, there are journal articles that are written, but you know a lot of times they're in very you know scientific

writing, not that, you know, patients can't understand that, but a lot of us don't have that kind of, you know, knowledge of statistics and all sorts of things. So companies are actually taking the time to work with patients to say, okay, here is the journal article, here are all the results. We want to make this patient-friendly so that when it goes out there to the public, when it's on Google and I find it, I'm going to be able to look at it and say, hey, this study

was done in my disease area and I think this would work for me and bring that to your doctor, bring that to you know your clinic or whoever wherever you're going. That's that was never done before. Those sorts of things are you know happening every day. They're all journals that you know they want patient insights. They want patients to be involved in. We get a lot of requests. Here's an interesting one. We got a request from

Pam (08:29.482)
a company for whatever their product was for a rare disease, and they wanted a patient to come to their sales meeting because their sales reps had never seen or met or talked to a person with that disease. And to me, that was so smart because then, the sales reps can go into the doctor's office and say, yes, we talked to a patient with X condition and this is why they...

you know, they need this type of product or this treatment or whatever it is. Um, and we get lots of requests for things like that to talk at a conference to, so not just research, but to share their voices in many other ways, which is, um, also fantastic and interesting. Sometimes we're working directly with a pharmaceutical company so they can get insights.

maybe prior to developing something, or maybe they have something in their pipeline that they're looking at, and they want to get patients to provide some insight about that product or about that service. And so they're bringing on patients in an advisory capacity. Other times we're working with market research agencies, as I had mentioned, doing surveys and focus groups and interviews. Sometimes it's an ad agency, sometimes it's a government contractor.

who is doing work on behalf of the CDC or the FDA or NIH to gather insights for their programs and their public health communications and things like that. So there are so many opportunities and that's kind of, that's one of the things I really love about my job is finding those opportunities so patients can be included.

And I mean, at this point we have over 145,000 patients and caregivers in 1,500 conditions. There's gotta be something for them to do, right? And that's what I need to do is find those things.

Skot Waldron (10:37.974)
That's amazing. I, what I love about your model is it's a win, win. Like everybody in the scenario is winning, which is pretty cool. Can you talk about that component of it? I mean, talk about how, you know, rare patient voice wins and then your client wins and then the patient wins. Like how, how does that whole thing talk about that?

Pam (10:47.364)

Pam (11:00.962)
How does it work? So yeah, so the, you know, from the patient perspective, they're winning, you know, in several different ways. So we do pay them for their time. They earn $120 an hour for sharing their expertise. So financially, that's, you know, that's a good thing for them. And, you know, in a lot of cases though, they'll come back to us and say, well, that, I don't, I don't, you know, that's not why I'm doing this. I really wanna be able to help other people.

I want to share my experience, my journey with this disease so that other people can perhaps learn from that benefit and maybe, like I said, shorten their journey to diagnosis. Or maybe if I had this kind of experience using this device or what it was, maybe someone doesn't know about that. So I'm sharing my expertise to help other people. So

That's, I mean, there's so many ways for them to win. The other win for patients, I think, is, you know, they're not, when you have a medical condition, that, you know, you're sharing with your family all the time and they've heard all about it, and you don't really wanna maybe worry your family all the time, so you keep a lot of it inside. Right? Then they have an opportunity to talk to a moderator, and they get to be in a focus group, or just, you know, and doing an interview, and talk to this.

empathetic, knowledgeable person who really is interested in everything they have to say about their experience, about the challenges they face, about how what do they do when they get up in the morning and like can't reach up to get a cup off the shelf or even doing all those little things that maybe they don't want to tell their family every day. This is a great opportunity for them to be able to do that with

you know, with a moderator who then can take all of that information, share it back with their client to help make things better. So I think there are a lot of, of positives for, for patients participating in research, both kind of altruistic, helping other people, helping, you know, them to feel good and feel proud about, you know, they're an expert in this thing, not that they chose it.

Pam (13:25.21)
but they know so much about their disease and being able to share that, and of course, then getting compensated for their time, which we feel is really important. So those, definitely for patients, that's a, it's a win-win-win there. For clients, it is that learning from the expert, right? So they have lots of brilliant scientists on their teams.

and who know a lot about the chemical compounds of that drug as an example, but bringing that human perspective, understanding what in terms of like clinical trials as an example, what will a patient bear? What kind of, if we're gonna bring, here's an example of, we have a lot of patients who are involved in protocol design, so that's before a clinical trial starts to see.

Okay, well let's say we wanted to bring you into the clinic, you know, six times a year, and what would that look like? And having patients say, well, you know, this wouldn't work for me or it would, and this is why. Those are really important for a sponsor, someone who is running a clinical trial, to know because one of the biggest problems in clinical research is keeping people enrolled. So.

so many trials are delayed because people, you know, they drop out for one reason or another. Well, if you make it a little more convenient, if you ask the patients, okay, well, if you could come four times instead of six times, would you stay in the trial? Those are things that could lead to a product coming to market more quickly. I mean, there's so many benefits for a pharma company to get insights or it could be a device manufacturer, you know, all kinds of...

organizations could be involved, but to get that patient insight, because it is something that they might not be thinking of, not in a mean way, but that they're looking at, okay, the very practical, we have this drug and this is what we want to do with it and we want to have, get this kind of information. But at the end of the day, when you talk to a patient, you might find...

Pam (15:43.618)
that you need to go down a different path or slightly alter your plan. And so I think that bringing patients into these discussions and bringing patients, whether it's about clinical trials or market research, bringing their insights and their thoughts and feelings into those discussions makes it more likely that things will go well because it is something designed for the patient.

by the patient. And I think that's really helpful for those pharma companies, device manufacturers, whomever it is, because you don't wanna create something and spend an exorbitant amount of money on something that people can't use. I mean, think about a device that if I have to bring it home with me and I can't hold it, I need to hold it with my left hand, but I can't, that's a failure. But if you test it with somebody, you would know. So those are important things.

And then for us, I just think there are lots of wins for us. Obviously, it's great when we're able to kind of be a matchmaker and connect those people with opportunities to share their experience and expertise. That's really gratifying. I mean, obviously, it's a business where we are being paid by those companies to do the research.

we wanna share that money back with the patients. So we have actually paid patients over $13 million in the past 11 years. And that's for participating in all the research that they do. They don't get paid for clinical trials. That's just something that's not allowed, but for all the other work. And that just keeps growing and it really feels good to be able to give that.

give the money to the patients and give the opportunity to the patients for them to be able to share their like I said share their expertise and kind of make things better for those coming after.

Skot Waldron (17:49.566)
And what's cool about your company too, is that the people that work for your company were also involved on the, you know, on the other side, um, learned about you and brought them on board and they wanted to be involved. Um, can you talk about that a little bit?

Pam (18:11.014)
Sure, so a lot of the people that work with us started out as patient advocates for us. So by that, I mean, we have a patient advocacy team that does outreach to all kinds of smaller support and advocacy groups. They're connected with 4,800 referral partners all around the world to help bring patients on board, which is amazing. And thankfully, we had that already set up during COVID.

But prior to COVID, and even now, we go to events in person. That's really our main way that we have found patients and connected with them over time. So we'll go to the National Hemophilia Foundation Conference or National Sickle Cell Conference. We set up our booth and explain what research is and how people might be involved, which is terrific. And prior to COVID, the year prior, I believe, we went to 350 events in a year.

And so some of those things were large, like these national conferences I mentioned, and some were like a diabetes walk or a Crohn's and colitis walk, all over. We had part-timers who would represent us and we gave all of them a kit and they would go out to their local area walk or conference and it was amazing because that's how we really built up this community significantly. And through that,

a lot of those people were interested in still working with us in some capacity. So when we would have an opening, a role that for a project management position or a sales position or a patient advocacy position, we would go back out to our patient advocates to see if there was somebody who was interested. And so over time, a lot of the people that we have been working with us in that capacity.

have come on board and a lot of us are caregivers or patients. And so we also have that kind of empathy and understanding for the patients and the caregivers because we have that experience or some part of that experience ourselves. So it's a really interesting mix and the way that we have.

Pam (20:34.01)
connected with people has been really in that grassroots way to kind of they worked with us they liked us and They wanted to stay with us. We have a you know a great team and people want to stick around which is a good thing

Skot Waldron (20:49.486)
I love that. And you do have a great team. I've worked, had the opportunity to work with them and I've loved the vibe and they're always so welcoming and just learning about their stories was pretty powerful in and of itself. How have you gotten here? So your company hasn't been around a super long time but you've made a huge impact on the community and spreading globally now.

and grown the company from, you know, five people to when you started to where it is now. And it's, it's like, give me the secret. What's your secret sauce to getting to where you are now? Like, what have you done to get there?

Pam (21:30.15)
Hmm. I think it's being good, nice people, and doing the right thing. We stand up for our patients, we make sure that they are compensated for their time, we try to find them as many opportunities as we can. And that's all external, right? We're trying to do that for...

you know, for our patients to make, you know, the world a better place for them, for pharma companies or market research companies to help them to get the information they need. Internally, I think it's really about kind of professional development, caring about the people who work with you and trying to help and cultivate them in ways that help them to grow. In, you know, in general.

because of the way that we have brought people on through our patient advocacy team and through those connections, most people didn't have experience in research. They didn't have a background in it, they didn't have a background in patient advocacy or sales or how to manage a project. So really being thoughtful and aware of that and understanding that it's something you can learn and helping them to feel comfortable. One of the things that

you know, I love is that when, you know, if you make a mistake, everyone makes mistakes. The West would always say to people, look, I've made every mistake you could possibly have made, so it's okay. And I think that has been great for people and, you know, then leading the teams, you know, as you know, that we do, I think we try to filter that to everybody to understand, look, yes, if something didn't go right or you didn't.

do something in the way that was supposed to be done, it's okay. It's, you know, it isn't going to be the end of the world. And I think that that's a nice feeling for people because there are places that we have all worked where you'd be afraid to lose your job, right? If you did, you paid people, you know, an extra $500 by mistake, right? You're like, oh my gosh, what did I do? But we have a different, a different vibe. We're very, you know, supportive and we...

Pam (23:46.774)
want people to grow. Obviously we've worked with you several times, which has been fantastic. You've worked with our leadership team. And we try to, and for many years, have tried to do some professional development quarterly to help people grow and provide those opportunities to them so that they can continue. We can all do our jobs, right? Day to day.

but you always wanna be growing and learning more. I do. I think that's kind of a thing that I really like and I enjoy doing things like that, taking, listening to webinars and all of those things. And so we provide those opportunities to everybody. One, that we do company-wide. So we'll do that quarterly, as I said. And then for...

you know, kind of internally, or internally, but people's goals, their individual goals, include a professional development element. And so we'll have, you know, we have a quite a large list of different courses people can take. And if they have something that's not on that list, they can propose that. And, you know, we, in the cases that I know of, we've always supported that. So they're doing something, you know, that we as a company think is important.

quarterly, but then something that they are also interested in, they're doing themselves over the course of the year to reach their goals. So I think that's really important and just being, like I said, just being nice and caring and being concerned about the people that you work with and flexible and knowing that what you're doing is a really good thing for the world makes it sort of

Good people wanna do good things, right? So I think, you know, it's kind of a nice job that makes people feel good. And so, you know, like I said, people stay with us and I think we try to do the right thing for our patients, for our clients, and also for, you know, all the people who work with us. You know, it's important that everyone feels supported and I think that we do a good job of it. Are we perfect? No.

Skot Waldron (25:41.419)

Pam (26:04.334)
I mean, nobody is perfect, right? But we really make an effort to do that. And one of the things that we did last year, which I thought was great and a really fantastic growth opportunity, which you were part of too, was our first offsite meeting. So the subset of people in the company who travel a lot and go to different events, we've met each other at different times.

larger company, everyone's remote. They didn't even know each other except for being like this. So being in person was amazing. People loved it. They wished it, they had been there longer and had a great time and learned things along the way too, but more importantly learned who their colleagues were in a more personal atmosphere and that was really cool.

So, you know, eventually we'll do that again. We did a virtual meeting this year, but I think that was really valuable and people loved it. So, I mean, I think it's just a combination. You said, how do we get here, right? That was your question. And I think it's a combination of doing good, you know, doing good in the job is a doing good type of thing, but also making sure that you're doing the right thing for.

your employees, for the people who work with you, for your clients, all of those things have to be, you have to be thinking about all of them at once, because once you forget about one, it all falls apart. It's a, what is, it's like a three-legged stool, right? You have to care about all of it.

Skot Waldron (27:37.346)

Skot Waldron (27:46.01)
Yeah. And I love this whole idea of like, do what's good, do what's right. And, and doing that, you've been able to grow the company where you are. You've been able to find the right people. You've been able to nurture those people. They've been wanting to stay with you. And, and it sure, it takes a bit of patience when you're working with people that don't have experience in research or sales or patient advocacy, like you're having to, it's not like they come out of college with, you know, some of these, some

Sometimes they do, right? But most of the time they're not. And, but you're finding the people with the passion, um, because they have been boots on the ground for you at times. And. There are already advocates for the conditions that they might be living with, or maybe they know somebody who's a friend or family member that, that has that condition. So, um, that's, that's really cool. And I think that a lot of companies can gather some insights from that.

Be kind and do what's right. I mean, you know, seems, seems pretty, uh, pretty, pretty basic, but how many of us don't do what's right. How many of us aren't nice when we're doing it and, um, For, for whatever reason that is, and I think that that's powerful and I, I can attest to this. Having the leadership team that you do that is so people focused, I think is, is incredible. Wes is so approachable.

He is a likable person. He's funny and he's great to be around. You have great energy. You are so for people and wanting to be that connection. Just thank you for being who y'all are. I think that's fantastic. If so we've have the patient side. We have also more the client side, whether that's, you know, marketing firms or any other agencies that are needing patients, and then they have you.

Pam (29:28.483)
Thank you.

Skot Waldron (29:42.87)
How do people get in touch with you if they are a patient? How do they get in touch with you if they need patience? Like, do they go to the same place? How do you arrange that?

Pam (29:54.45)
So on our website, there are actually two different branches. There's the for patients and then for researchers. So when patients want to sign up, if they don't meet us at an event or through one of our referral partners, they can go online and sign up there and add their information. And then we go through and add them to our community. And when we have a relevant study, we'll invite them to that study. So that's how they can get involved with us.

from the researcher side, we do publish all of our patient, the number of patients we have in each condition in each country online. So they can look there and see if some of the information is there. But if it's not, they're welcome to email us. They can email me, they can email Tiffany. Just to, you know, our sales team actually is, we have a sales email now that people can.

write to us and say, oh, do you have these patients in this area because we're doing focus groups? And we'll quick send back a proposal and information for them.

Skot Waldron (31:00.61)
Okay. Fantastic. And if they want to just hang out with you, Pam, because you are awesome to hang out with, where do they find you?

Pam (31:08.442)
They can find me on LinkedIn or they can email me, pam.cusick at rare

Skot Waldron (31:18.082)
Fantastic. Y'all are doing some great work. I'm so glad that I know you and I've got to know what you do through our LinkedIn, you know, communication and just getting to know your company and your people better and my eyes have been opened. I mean, it's, it's so cool. The impact that you're having, um, and the voice you're giving to the patients, um, and the access to these patients that you're giving to the researchers. So, uh, what you're doing is, is truly a win, win. And, uh,

That's awesome. That's so awesome. So continue to do the good work you're doing.

Pam (31:51.39)
you. I certainly will. Thanks for the opportunity. Happy to share with your listeners.


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