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Wes Michael is the Founder and President of Rare Patient Voice, a company dedicated to amplifying the voices of patients and caregivers through surveys and interviews to drive advancements in medical products and services. With a strong background in healthcare and a passion for improving the lives of those with rare diseases, Wes Michael’s innovative approach is reshaping patient engagement.

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Here’s a glimpse of what you’ll learn:

  • [4:13] How Wes Michael transitioned from a career in marketing and market research in the food industry to founding Rare Patient Voice
  • [5:35] The growth of Rare Patient Voice to panels for over 1400 disease categories
  • [9:05] The challenges of diagnosing rare diseases and the potential role of artificial intelligence in improving diagnosis
  • [13:13] How Michael’s business model rewards patients for their participation in research studies and encourages word-of-mouth referrals
  • [14:47] How companies can use better language in patient communication
  • [18:55] The significance of patient feedback in improving medical products and services
  • [21:22] The challenges faced by patients with rare diseases and how they can be addressed
  • [43:33] The importance of having SOPs and other documentation in place for business continuity

In this episode…

In this captivating episode, we delve into the remarkable journey of Wes Michael, the visionary behind Rare Patient Voice. From his roots in the food industry to catalyzing meaningful connections between researchers, patients, and caregivers, Wes has reshaped healthcare dynamics.

Wes takes us behind the scenes of his eureka moment, sparked by the creation of a patient panel for a hemophilia study. Despite its potential, it took over a decade for his concept to evolve into the groundbreaking platform. His story is a testament to the power of perseverance and seizing the right moment.

In this episode of Inspired Insider Podcast, join host Dr. Jeremy Weisz and guest Wes Michael as we uncover the intricacies of patient recruitment, the potential of AI in diagnosing rare diseases, and the evolution of Rare Patient Voice. Wes reflects on the importance of patient feedback, the significance of maintaining data integrity, and the strategies that drove his company to self-sufficiency. Explore the fascinating journey that has fueled a platform connecting voices for better healthcare.

Resources mentioned in this episode:

Special Mention(s):

Related episode(s):

Quotable moments:

  • “We’re filling that gap between the people that want to talk to patients and patients that want to tell their story.”
  • “You can’t always get people to do what you want them to do when you want them to do it.”
  • “Our business is about quality, not quantity.”

Sponsor for this episode

At Rise25, we’re committed to helping you connect with your Dream 100 referral partners, clients, and strategic partners through our done-for-you podcast solution.

We’re a professional podcast production agency that makes creating a podcast effortless. Since 2009, our proven system has helped thousands of B2B businesses build strong relationships with referral partners, clients, and audiences without doing the hard work.

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We make distribution easy.

We’ll distribute each episode across more than 11 unique channels, including iTunes, Spotify, and Google Podcasts. We’ll also create copy for each episode and promote your show across social media.

Cofounders Dr. Jeremy Weisz and John Corcoran credit podcasting as being the best thing they have ever done for their businesses. Podcasting connected them with the founders/CEOs of P90xAtariEinstein BagelsMattelRx BarsYPOEOLending TreeFreshdesk, and many more.

The relationships you form through podcasting run deep. Jeremy and John became business partners through podcasting. They have even gone on family vacations and attended weddings of guests who have been on the podcast.

Podcast production has a lot of moving parts and is a big commitment on our end; we only want to work with people who are committed to their business and to cultivating amazing relationships.

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Rise25 Cofounders, Dr. Jeremy Weisz and John Corcoran, have been podcasting and advising about podcasting since 2008.

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Episode Transcript

Intro  0:01  

You are listening to Inspired Insider with your host, Dr. Jeremy Weisz.

Jeremy Weisz  0:22 

Dr. Jeremy Weisz here founder of I talk with inspirational entrepreneurs and leaders today is no different. I have less Michael from and West before I formally introduce you, I always like to point out other episodes, people should check out the podcasts. This is really a cool bridge between helping researchers and patients. And I actually did a health and longevity series on the podcast because this is a passion of mine. I love talking about health. Health is, you know, if not the most important thing, one of the most important things for us. And so some of the people I had on the checkout is Dr. Michael Rose, he did a 40 year research study on longevity with fruit flies.

Jeremy Weisz  1:09  

And it’s really fascinating research that they did. I had Dr. Bill Andrews, who was in biotech in cancer research, and he started looking at it from a longevity perspective. And another one of my favorites is I had Dr. Loren Cordain. And Dr. Sebring. And Dr. Loren Cordain is kind of the godfather of the Paleo diet, and he was a person most people don’t realize that he was a researcher for 30 years at Colorado State University. You know, we’ve heard of the Paleo diet as a fad diet, but actually, there’s a lot of research and peer reviewed scientific publications that he did for that specifically. So check that out and many more on inspired This episode is brought to you by Rise25 and Rise25 we help businesses give to and connect to their dream 100 relationships and partnerships. And how do we do that? We actually help you run your podcast, you know, we do strategy, we do accountability in full production execution for a podcast, we’re an easy button for a company to run their podcasts.

And we call ourselves the magic elves that run in the background and make it look easy for the host in the company. So they could just build the relationship, create great content and run their company. You know, for me last, the number one thing in my life is relationships, I’m always looking at ways to give to my best relationships. And I found no better way over the past decade to profile the people and companies I most admire and share with the world what they’re working on and spread the word. And it’s really amazing to produce content with great people, and other people can learn from and share it. So if you’ve thought about podcasting, you should if questions go to rise 20 And I’m excited to introduce last Michael, he founded Rare Patient Voice in 2013 to give patients and family caregivers the opportunity to voice their opinions and research studies.

And Rare Patient Voices conducted 1000s and 1000s of studies, and they reward patients and family for doing that and they’ve actually rewarded over $10 million for their participation in these studies. And it’s amazing people love it because it helps the researchers, it helps society and it helps them. So last thing for joining me. Hey, great to be here. So first of all, you know, I was looking at your background. I’m curious what you thought you were gonna do. Okay, because, you know, you majored in English, right in Pennsylvania, then you went on to get your MBA a booth. But then you worked for General Mills and McCormick for over a decade. Right, a long time. What was it originally, when you were getting your MBA? What was it that you wanted to do at that point?

Wes Michael  3:59  

You know, I was interested in marketing and market research, I had gotten a little tiny taste of market research. And I didn’t know anything about statistics or anything. It was embarrassing What I didn’t know. But I thought it was kind of interesting. And so I kind of had an open mind. And, I remember as I was getting that MBA was like interviewing for different ones and who knew what it would be but I ended up getting a job and market research at General Mills, which is a great training ground. They knew everything about you know, market research. So I thought, well, it’s kind of like getting inside people’s hands and seeing why and what decisions they make , so it says I don’t know what it sounds like to most people but it’s actually a fascinating area.

Jeremy Weisz  4:36  

What didn’t you remember anything that you learned from the research you’re doing in General Mills and McCormick that you bring to Rare Patient Voice?

Jeremy Weisz  4:47  


Wes Michael  4:50  

You know, you really have to put yourself in the shoes of the person because you’ll say well, why do people like General Mills and Gordon’s fish sticks filet, right? And the fish, the guys who made it, that’s the thing, new fish, the fish sticks were the same actually high quality fishes with laser just bandsaw set. But in people’s minds, fish sticks are pressed on the other. It’s like it’s all about their perception. It’s very different. And the first assumption was it was cheap. And it was not not real. And they’re like, well, it’s not. It’s like, well, you’ve got to deal with what people are thinking and then figure out about it so and then that’s carried through in so many ways, because you get to the healthcare.

It’s like, one of the first studies I did in healthcare, the client had a pill for anxiety. And they were using the term which physicians would use for oral therapy. It’s like, no, no, that sounds like you’re talking to a counselor, right? They mean, oral they mean, you take a pill in your mouth? Well, you gotta call it a pill. You can’t call it oral. Yeah, you know, these are normal people who think about how you talk to your mom, right? You got to talk, understandably. So. That’s one thing I Yeah, sounds so obvious. But you know, there’s a lot of people that have missed the boat on them,

Jeremy Weisz  6:09  

Give us a little overview of Rare Patient Voice and what you do.

Wes Michael  6:13  

So what we do is very simple. We go out and meet patients, and in fact, recruit patients to be part of our community, a panel. And then we get opportunities all the time, from clients who want to do research, they want to do a survey, they want to do a phone interview, they want to find out what the patient experience is like. And so we’re the matchmaker, we have, Hey, you want people with Fabry disease to do a 10 minute survey or a one hour interview. And we have people that want to do it. So let’s link them together. Let’s make sure they’re protected, confidentiality and everything and that they get paid. So it’s, it’s kind of a simple thing. But we’re filling that gap between the people that want to talk to patients, and patients that want to tell their story.

Jeremy Weisz  7:02  

It’s a dual sided marketplace, right? You have to find the researchers, you have to find the patients talking about the patient side, how have you been able to get people to hear about it in order to do it.

Wes Michael  7:18  

When we first started, I didn’t know any better way than to, especially with rare diseases, because you could have a million people, but you might have three with hemophilia. So you have to go to where the people are. So we would go to patient events, when it was just me, I would go to the Haemophilia conference, and set up a table and a clipboard and talk to people and explain to them and they would sign up. So that grew until we had a whole team of people going to events all around the country. You know, there’s walks for MS and all these disease fundraisers, but we wouldn’t be part of that. We would sponsor them and set up our table. And, and, and it worked. We’ve got people that I’m like, wait a minute, we can’t be everywhere, right?

How are you? We don’t want to exclude people. While the good news was the problem kind of solved itself. Patients, no other patients right there in the support group. If it’s a genetic disease, that could be relatives, advocacy, so they would be treated well, and they would refer to other patients and we said, Wait a minute, let’s reward people for referring to us. And so we set up referral programs. And then COVID hit. And all of a sudden, there were no in person events for a while. And thank goodness we had started some of these other things. So we have a whole team that reaches out, works with advocacy groups, works online, finds people, puts ads out on Facebook and things like that, to find people anyway in every way. But the key thing is the old fashioned word of mouth. People tell other people, especially if they’re treated well, and we’d like to pay people as soon as possible, all that kind of thing.

Jeremy Weisz  8:53  

So it’s cool how you get started. It was with hemophilia.

Wes Michael  8:59  

Yeah, yeah. So I was, I’ve been in as you said, I’ve been working in the food industry, right. And I moved into healthcare in the 90s. And that was when they just started to make the ads legal, those ads you see on TV as your doctor about this drug, and river. Count. Yeah, we were working with a company that was in the hemophilia space. And he would see it is quite rare. Especially at that time, there’s only a couple 1000 people in the whole country. But one of the medical companies that worked in the area said, Look, these people are very valuable to us. We need to know more about them. We want to interview them on a survey and we really find out what products and services we can bring to them.

Can you create a pan market research we call a panel a group of these folks. And you know, your personal company, you bid on these things? We didn’t know if we could do it or not. But we wanted it so we had to figure out how to do it. And so what we did is we went to the National hemophilia conference, set up our table and had all our giveaway items and it worked. We explained to people what are you? He’s talking about No, Your opinion is valuable. Please sign up. And every year we went back and we got more people. And it worked out. Well, the company would have us do interviews and surveys as well. But what gave me the ideas a couple of years later, I was back at the Haemophilia conference, and a different client, a different manufacturer came up to me and said, I hear you have this patient panel HemoCue, can we access it? And we’re like, Well, no, because it was paid for by another company. I can’t just give it away. But that gave me the idea. It’s like, wait a minute, why not create something that’s not restricted to any one client? And make it available? Because people love to share their story, but it’s hard to find them.

So I had that idea. So I have this idea. I didn’t do anything with it for over 10 years, I would tell my wife and she’s, uh, yeah, right. And I was, I guess, like, I’ll go ahead and be forced into it. I was working for a good company, but I ran into some cash flow issues. And he asked me to, can you work for a couple months and not get paid? And we’ll figure this out. And I said, Well, that’s creative. But let me if I’m not being paid, maybe there’s something else I’d rather do. And it was perfect timing. My wife, who had been out of the workforce, was looking for a job. And our kids were getting a little older, and she got a job and had health care, right? It’s all about health care. And it’s like, look, okay, you do that. I’m gonna be at home with the kids this summer, setting this thing up. And guess what the first thing I did was, go to the Haemophilia conference, because I had done it before I knew it worked.

I knew there was a demand. And I knew it was going to work. Because on my way to that conference, it was in Disneyland in Anaheim that year, I got a call. Because we had just set up the company, I had the name, we didn’t really have anything to offer yet. I didn’t want to say too much. But somebody called me and said, we’re working on a hemophilia project, and we can’t find anybody. Do you have anybody? I said, No. But by the end of the weekend, I will. So I went out there. And by the end of the weekend, I had 100 people that did the search, and that was our first project. And I didn’t know whether that would be it. I’ll just work in hemophilia. That’s a nice bit. Well, now we have 1400 disease categories and done 1000 projects, et cetera, et cetera. But that was the start. So it was just somebody who gave me that little idea. And I had to be pushed, pushed to act.

Jeremy Weisz  12:05  

We’ll talk about I mean, some of those 1400 diseases, but I want to hit on pricing for a second. Because in the beginning, it’s hard to know, how do I price this? And also, how do I pay people? It sounds like from the patient side, you discovered, okay, we pay them a certain amount. Also, we should pay for referrals. Talk about how you and you were thinking through pricing . Well, I could charge a company. But if I want to make it available to everyone, talk about how you came up with the evolution of your pricing model?

Wes Michael  12:38  

Evolution is a good word, because a lot of it is tweaking and adjusting and changing. So in terms of the patients, I just thought $100 An hour sounds like a nice round figure. I think people will be attracted to that. Since we’ve raised it, you know, there’s been some inflation now it’s 120 an hour, but so did that. But then I wanted to entice people to sign up at these events. And I said, Well, I’m gonna give you a $10 gift card. And that that was pretty exciting to people over time that got adjusted in two ways. First of all, like, Wait a minute. $10 is a little, you know, and we get and I looked up the three most popular gift cards, and then maybe they still are : Amazon, of course, Dunkin Donuts and Starbucks. And you could it’s funny, different patient events, you could see people with different tendencies about which one they were, they would like.

Jeremy Weisz  13:25  

But you were doing your own little research on which is popular.

Wes Michael  13:30  

Given people that shouldn’t be you’re getting Dunkin Donuts, but enter the whole story. So, we would offer that over time. We said, Wait a minute, let’s make that $5 gift card and then we’ll give $5 for our referral. And then now we’ve we and over time, we got even further, we said wait a minute, $100 an hour and $120 an hour seems to be a good incentive even without a gift card. So now we don’t give a gift card for signing up. But we give a $10 referral so we’re really it’s kind of it’s the supply versus demand. You know, we pushed it into the referral thing and now we have 3500 referral partners that are out there. Some of them make it a little part time job, they’re always out there talking us up and finding people so that that was from the patient side.

Jeremy Weisz  14:16  

Yeah, I mean if someone recommends like 10 or 100 people a month I mean that adds up pretty quickly.

Wes Michael  14:22  

And there’s some people that are online as you can imagine they’re online on Instagram too and some of these people are getting several 1000 bucks and of course everybody gets over 600 bucks we have to do it 1099 and report it now but hey, the more the merrier.

Jeremy Weisz  14:38  

Let me understand for a second West with it for this sign up because I feel fascinating. They get if they sign up they get $5 How do you ensure they actually show up for the actual study?

Wes Michael  14:53  

Well that’s that’s that’s a big issue of it caught in the industry is called no shows and we all hate notion and with patience. It’s gonna happen in real life, they have a flare up, they have an attack, and some people take it more seriously than others. Some people Wow, they want to do an interview. So we’ve, we’ve done various things over the years to help. Most importantly, you contact people you try to call on you, texting is good, because how often you read an email, but people do tend to look at the text that we even came up with a new thing just this past year, we hire people that are called schedulers, because we have project managers are on project, but it’s not as easy as it sounds to call these 10 people when you’re trying to do 1,000,001 things and get so people are just happy to get on the phone and reach out to these people. So that’s a big help.

And then we’re getting smart because now we have a proper database, etc, etc. We can see who’s been reliable, incoming and who’s not, especially for the first few interviews, the very first interview, you don’t want to know the show, you know, the clients there, everybody’s listening, it’s very important. If somebody doesn’t show it, everybody feels terrible. If it’s the 10th interview, they hardly noticed that it’s gonna get rescheduled. So, okay, let’s make sure the first first people, the first few are the most highly reliable, at least alert the client and say, Hey, here’s, here’s the track record. So there’s a lot of it’s human behavior, you know, you can’t, you can’t always get people to do what you want them to do when you want them to do it. So you have to try a lot like raising kids, you gotta try a lot of different things, and hope for the best.

Jeremy Weisz  16:23  

So the patient side and the pricing. Talk about the companies and the research. Yeah. Because I know you’ve toyed with a few things there.

Wes Michael  16:35  

And the pricing side on that was it wasn’t, it wasn’t clear exactly how to do it. Because most people say, Mark in our industry market research. Typically you’re bidding on these big projects and your custom pricing, what will this company pay? And we’re like, we needed ours, it’s become a volume business. We’re just we’re not doing the research. We’re, we’re matchmaking, we want to make it simple. So I, we said, I came up with some numbers. Well, for a phone interview, it’s extra $100. For a recruit and for an online survey, the numbers are bigger, but it’s a simpler process. So it’s a lower number. And, I just tinkered with it a bit. And it seemed to work. And I think we were under charging for a while. But undercharging was not a bad way to get started. Because people said what do we have to lose? Let’s go with this company. And then over time, we kind of saw what it was. But the thing that we did was that you could argue that it doesn’t make sense.

But I liked the way it worked. We charged the same amount no matter how rare the diseases. So when we can publish our pricing to everybody knows where it’s going to be. We don’t argue about what you said it was this but it was a sliver. And it’s harder to get than you thought. It’s like it’s right out there. And then when we expand it into the non rare I thought, Well, nobody’s going to pay the same price for type two diabetes as they’re going to pay for hemophilia. Well, I was wrong, because people love quality. They’re tired of getting fake responses to leave. This is fraud and the moniker there’s fraud. Right anywhere? There’s $1 I guess there’s fraud? Why not? But anyway, we get a lot of business in that. So I was surprised. And so we haven’t had to. We haven’t had to adjust it.

The other thing is typically in our industry, people, you know, yeah, give me a deal I’ll give you I’ll give you a business we get, we haven’t had to give anybody a discount for anything, we can be honest about it. We say here’s our price, we got the same bid for this study from somebody else, we can’t be giving you a better deal than them. They did. Okay. So I’m fortunate because we’re a bit of a unique player. If we had 10 people doing the same thing, I’m sure there’ll be a race to the prize. But we haven’t we’ve not had ever had to discount our pricing. And if anything again, I think we’re not overcharging so. So I think it’s a good deal for everybody.

Jeremy Weisz  18:50  

So companies will pay you for the number of people that you help get for their study.

Jeremy Weisz  18:56  

Right. Got it.

Jeremy Weisz  19:00  

So the original model that you were thinking of sharing the data or the research that kind of hit evolved to what it is now with just getting the people and you just get paid for the people that you recruit for that study.

Wes Michael  19:15  

That’s right now that was that originally that was I mean, I you get I used to work where we would do all the research. But when I started this, I’m like, No, let’s leave the research to others. And so consequently, our clients are not, you might think they’re the biotech and pharmaceutical companies. They are not indirectly they are our direct clients or other market research firms that in turn are working for the fighters and mercs and everybody on the down the line that actually are doing the interviews and writing surveys and analyzing data. I like to say I leave the I know that I used to do that. I’m leaving the harbor to them.

Jeremy Weisz  19:48  

It lets them focus on kind of their superpower and just have you help get the people so they could focus on the research back

Wes Michael  19:57  

Like they don’t they don’t have to worry about that. If they tried to do it from scratch, it would take them a long time and actually cost them more we bought our point, that’s probably the thing that we did that was new is, we said, most companies, like we’re not doing anything until we have a contract, someone’s gonna pay us, we said, No, we’re gonna do it ourselves, pay for ourselves. When you need it, we’re gonna have it now we’re taking it, it’s a leap of faith that somebody’s going to want it. And we’ve had some people that they haven’t used. But it’s worked. People love it, we didn’t know we could do a project in two weeks instead of two months. So it’s the client, you know, clients are very happy to do that.