Why Fibromyalgia Care Needs a Better Access Model

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0:00 In MedTech, the difference between a good quarter and a great one isn't always the product. It's the friction standing in the way. Broken sales cycles, misaligned teams, deals that stall at the finish line. Every leader feels it, and the best ones know how to remove it. Welcome to Zero Friction, the podcast where we go inside the minds of MedTech's top commercial leaders to uncover the real barriers they face, the decisions they make, and the systems they build to keep the revenue moving. I'm your host, Terry Coutsolioutsos. Let's remove some friction.

Well, folks, welcome to the Zero Friction Podcast, and I have a really exciting opportunity today for all of us. John Nycz, who is the co-founder and CEO of Rapha Digital Health, is with us today. John has spent sort of a couple different careers. He's been in the the operations business, Lean Six Sigma. He's probably spent the last 10 to 12 years in healthcare as an operator, and he's now just co-founded this new Rapha Digital Health platform, and we're here to get a better understanding of John's history and his purpose, but also more importantly understanding what Rapha can do for healthcare purposes moving forward. So, John, great to have you.

Appreciate you being here. Why don't you give us a little background on yourself and Rapha as well? Terry, thanks for the opportunity. I actually got started on this journey in 1995, oddly enough, with the 100-mph combined impact head-on collision. Uh I suffered what was described as the same injury that would be received if you jumped out of a seven-story window. And the bone wasn't healing. The surgeon suggested we fuse the joint, which would have obviously had significant impact on how I conducted the rest of my life. So, I did some research, found some information on early bone stem devices, found an acupuncturist that wired me up, and then, over the course of 6 weeks, I went back three times a week. Long story short, hard bone growth. I've had no limitations except I can't run long distances. An amazing recovery. And the way we tied it back together is um uh in 2015, I was approached by another company about this. I learned some valuable lessons about how important it

Is to have the economics in place so that the research can get done even for therapeutics that were viciously effective. A lot of these devices add huge value in things like uh diabetes and treating non-healing wounds, neuropathy. It's It's pretty significant. So, the way that transitions, Terry, is we started looking at this problem through the lens of my prior experience with operational excellence, lean six sigma leaders. I got to hang around with a lot of people who did some very interesting things with analytics. Going to their presentations, I would pick up how these connected into the business. And so, when we started looking at the problem we're looking at now, there was a big gap with the data. And And what we saw was we're looking at it through the lens of treating fibromyalgia. We were asked to be involved with a project. And so, it was pretty narrowly scoped out already. The lessons I walked away from with those experts on those subjects was

3:19 Make sure you keep this thing scoped enough. Well, the problems with health care information are too huge to begin. So, that's the correlation to take this thread from my sweater and walk away. We found a thread. We found something we could start pulling on in a corner that is vastly in need of improvement. And then, those improvements we propagate across other complex chronic conditions. So, what What's sort of like the main driver behind Rapha today? So, we have fibromyalgia, number one, which is, you know, a chronic disease, to Rapha, is it a sort of a health platform? Like, what is the the foundation and the backbone behind what Rapha's purpose and intent is?

Good place to start. It's really an ecosystem. We support clinicians by getting them better information in a more timely manner. And we'll get to what we do with collecting that information, but an electronic health record these days has a lot of things in it that don't necessarily add up for the for the guy or or gal that's trying to what's wrong with this patient. So, they've got to sort through ICD-10 codes, you know, information about reimbursement optimization, all kinds of other information are floating around in these documents. It makes it easy to streamline that and pull forward what's relevant just for those clinicians. But, in this particular case, there was also some big gaps regarding education and content. They're simply not trained on other alternatives, and the data set's not looking for that.

So, let's talk about like fibromyalgia to just Go ahead. I was just going to say the ecosystem ultimately allows us to write care for patients. So, the platform that we have built does a couple things. Take advantage of the fact that telehealth for this population is such a better option because you can frequently see that patient. The 90-day path that they traveled with us is is much different than the 5 to 7 years it can take for a diagnosis for these patients, and they're spending a lot of money along the way. So, again, the decade that I spent with those operational excellence executives, the people driving process improvement in the world's largest organizations, was invaluable because we looked at this, and there's gaps all over. There's a lot of things that we can close with tools like lean and and process control, making sure that we're compliant, and making sure that we can more effectively manage the the business. A well-run telehealth organization can operate 20 or 30% less than a clinic, and 30% of these patients

5:59 Are missing their clinic appointments. So, that's friction. So, that's friction and definitely inertia, too. So, you know, let's talk about the pain points for the patient that does have fibromyalgia, as well. So, you know, I know that they have their own sense of friction in their world and, you know, it's it's hard to diagnose, it's harder to treat, it's harder to it harder to identify what treatments work with what type of patient, and yeah, it sounds like, you know, having a digital health platform that is foundational an ecosystem for these patients is a great start.

It really does tie together what we'll circle back to with with a data moat. The, you know, the noble purpose of of what we're doing is really about getting this data set together that we know has been subject to by exclusion bias. It's it's simple. The chief commercial officer at a pharmaceutical company doesn't necess- a lot of the things that might have impact, will have impact, aren't relevant to what they're trying to accomplish. Just being candid. But, there's tons of activity that's not being tracked, and when we compile this information, we can see the correlations, we can monitor frequencies, we can see is Lyme disease relevant, is a trigger, is stress relevant is a trigger. We get more and more information around that, but we also are able to see um our efforts to manage gut health valid with a larger portion of population. And it will be no simple answer. Oh, we discovered that if you pull your earlobe twice, it's not that. That's where personalized or rather in health care comes into focus.

So, we can use that information um, to derive a lot of valuable informatics for the clinician. That's really the the neat That's what gets me out of bed every morning is knowing we're actually fixing a problem. And if you talk to these people who've done the primary research and had some meaningful conversations with family members and patients that wrestle with this, it can be life can wreck your life. It's significant and a lot of comorbidities get dragged along in the way. You know, the well stat I think, you know, I talked about it earlier that, you know, eight out of 10 patients that have fibromyalgia are female, right?

And, you know, that has a a major dramatic impact on personal, professional, work life, work life balance. I mean, you know, and families. Families. Predominantly, mom's role is a big one. And it's multi-faceted. Typically, they they will often go three days without sleep. Think of the ramifications of that, knowing just what the health impact of that is. Right. But, fibro fog, you mentioned pain points and I know you were talking about kind of pain points as far as managing what's going on with all this, but I think there's 18 of them that they used to track where this the they would have pain that during a flare-up, you know, it might manifest itself in one place or another. Very much like rheumatoid arthritis, but absolutely devastating.

9:05 Impacts their ability to work, their absenteeism, presenteeism. Affects their husbands, their kids. It can be really bad. Sure. You know, just think if you're a single mother and dealing with something like that as well, it must be really a dramatic impact when you're the only caregiver in a lot of ways. So, huge problem, a lot of pain that goes with it just in terms of dealing with the the pain itself and and trying to figure out how to fix it, right? That's the other thing that you and I talk about is that and there's really no way to quickly diagnose It's a great point. It's a It's a diagnosis by exclusion. So, that Another challenge that we face with today's healthcare paradigm is we simply don't I can't get an appointment. It's It's 4 months. It's 60 day 180 days that they can be a long way out. So, given the fact that it's a diagnosis of exclusion, it takes patients a long time to hit the frequency they need to to gather all the

Information to say, "Well, it's none of these things. Therefore, it's this." And we can in the telehealth world, not exclusive to what we're doing with our ecosystem, we have a lot of other benefits we'll discuss, but just in the telehealth paradigm, that frequency can be easily managed to days, couple weeks here, couple weeks there. I mean, most appointments for most patients will be in the next day or two, and we'll feel bad about two. Right. So, when you talk about that ecosystem, right? So, what is What's underneath that ecosystem? So, we talked about telehealth number one. What other parts of Is there communities? Or Is it Is it a patient-based community? Is it a clinician-based community? Or is it all of the above? So, kind of describe to us what that infrastructure looks like.

Great question. Some of it will be driven by the way we develop content. A lot of that content is used for marketing purposes. But, we'll have content targeted to both the patients and some of the other people influenced and in the university universe of the patient and to the clinician. Obviously, the clinical content will be retrospective case studies, things like that, and some things that we can get our teeth behind. And then, the content that we build for the patient will be shared in that community with the patients and selectively outside that community, but it will include everything we need to do with EEAT to make sure it's valid for AI. They expected to 2 years to be about half the people that were going to the internet for health care searches would be using that platform. I would not be surprised if we're already there. And this prediction was made 9 months ago. So, it's very quickly moving that direction and the content that we're developing

11:45 Will support that. It will also be much wider and broader than what happens in real life with the patient's journey when they finally get to the end of this rainbow and they've received a fibromyalgia diagnosis because everything else has been ruled out over 5 to 7 years as they'd spent 5 grand a year out of pocket or more. The big word is, "Okay, now we can cover you, you know, some hearing insurance claims for fibromyalgia, but most of the treatment alternatives that will be put put forward in traditional health care are going to involve pharmaceuticals. Yeah, it's not the only answer. So, our mission is to, you know, widen that data set at the same time as we make sure that it's all valid and relevant. And that's another part to get to.

Is there anything that that we can, you know, like not just treating fibromyalgia, but is there anything out there in the horizon around actually diagnosing it? So, that you can again get back into the sort of mindset of precision medicine versus, you know, you said that you're basically reverse you're just figuring out what's not working and it's sort of becomes the the the result of subtraction versus actually aiming at something. I don't think so. Here's the upside though. If I had to guess, and again, I should set the stage correctly. I am not a clinician, but I did a lot of homework and I think what we're going to find instead, that rather than having this is the definitive root cause of this condition because there could well be multiple, we will find that there's going to be things that make a big difference. Low inflammation, managing your inflammation, managing your gut health. And these things won't be, "Hey, fix fibromyalgia." These things when we get done collecting enough data and

Tearing it apart will be Oh my god, that is chronic fatigue, too. Oh, that's a big help with Lyme disease. Got to start there. Brain and the gut are connected, and it's really interesting, but some of that stuff got skipped along the way. And if we collect enough data and enough spaces, we can make sure as long as we can ensure that data is correctly corrected and managed correctly. So, that's why we stack the deck with a lot of these people that, you know, have been running operational excellence and really understand lean six sigma, process control, analytics, and continuous process improvement. So, we actually use AI to improve the processes continually, which is interesting.

So, how big is the problem? Like, how many people are being treated for fiber my fibromyalgia today? Like, how big is that problem in America? It's pretty significant. 4 million patients diagnosed, another 6 million looking for answers, and the potential for another 4 million above that that are, you know, trying to find Do I have chronic fatigue, or do I have Epstein-Barr, or do I have uh or do I have fibromyalgia? Okay. But, 10 million is the estimated number of people that are wrestling with these symptoms. So, basically, almost 2% of our population or thereabouts, right, are wrestling with those types of symptoms.

14:55 Yeah, what was it? Um 2.9 I thought. Something like that. Yeah, it's a it's a pretty significant number. And again, not everybody's in They're all, you know, they may have different levels that they're impacted at, or are managing it more effectively. Another part of this population of 6 million people that may have fibromyalgia that have not received a diagnosis yet is a cadre of folks that, you know, I'm getting by I'm handling on my own. I did my own research. I know what's working. So, you mentioned the communities. Right. Yes, we absolutely are building communities for both and we want to have the best content and quality of information that's available in those communities. There's a lot of great communities and interaction that goes on in some of the public domains.

And there's some shady stuff, too. There's some platforms that we've looked into that don't really have any structure behind it. Some of them are leading some great research, but in any social platform, it's a little bit of a free-for-all and you really do not know what is clinically relevant, what has been correctly measured, what is making a difference and what isn't. And that's primary among our missions is being able to go up here. Yes, here's the data. Right. And here's a community and, you know, here's here's a clinician in this market and, you know, it's I think you know, when you think about the opportunity that that Rapha Digital Health has is not just collecting information, but it's disseminating, it's using information so people have access to it as well. You know, what are typically people like who are treating themselves, what are they treating themselves? What is it? Diet? Is it exercise? Is it meditation? Is it like what are, you know, like how are people

And that doesn't sound like they're getting cured from anything, by the way, either. That sounds like they're treating symptoms, right? And that's the other part that, you know, A lot of the traditional Western, you know, the allopathic medicine uh methodology is built around a symptomatic relief. Let's at least get it to the point where you you know, where we can improve upon this, which is a bit of an irony in this situation because it takes so long to get them to the point where we can provide them relief with the you know, the tools that we have, which are primarily, when you get that that diagnosis, if you hung with it long enough, here's your script.

Right. It's the primary answer that they're going to get. We know that managing gut health has all kinds of benefits. Inflammation kills. It's It's just not a good thing. If a fibromyalgia patient is drinking too much, that's just a nightmare that has to stop before anything can can begin. And by being able to see these things and make sure that we've got good information coming in, we'll spend 90 minutes and have a couple hundred questions. And they're tiered down. So, it's not like they have to answer a couple questions. But, that kind of detail we need to get from the to put the longitudinal zero-party data, the direct from the patient information in that's pulled in from a clinician that knows how to manage this. To get good information, it takes that. They don't get it with their 15-minute session every 4 months caught in the traditional paradigm. So, changing that does two things. It It allows us to really more efficiently deliver care by

18:21 Reducing friction. And it allows us to collect a great deal of data. And we're putting out, you know, there's so much we can do now with remote patient monitoring and those options to get good information. So, what's the game plan? Like, you know, how do you go through I guess a couple things. One is you're going to need some sort of patient acquisition process or system, right? And then you're going to need to recruit and get clinicians on board, too. I'm guessing along some along the way as well. So, what does that look like for you building this this model out?

It can scale out. Let's address the first the last thing you said first. Clinicians will manage a number of nurse practitioners and physicians assistants underneath them. We'll have a cadre of nurses underneath them. And we can roll it out in a cadence that allows us to scale it. We've complicated our equation a little bit because we got some feedback. The patients that we're working with, at least in the start, and I would think this holds true with most complex chronic conditions, but they hurt. They haven't slept. They're not necessarily processing everything cognitively. They do not want to have to speak with resources that are abroad.

So, a lot of these calls for telehealth organizations are outsourced. We built in having US-based clinicians. So, it makes a little more more difficult, but um the system that healthcare professionals are working within right now is truly a uh treadmill. It's really difficult for the clinicians to push the amount of work product that they have to through the system. I have a friend that's a surgeon. I've stayed at his home. When he's come home on clinic day after we grabbed a piece of pizza and stayed up till 1:00 doing great case notes and in the OR at 7:00. That's no way to live. And we're asking these people to And you're not giving your best the following day as well, too, right? Like, it's not just a living, but it's just, you know, like, your body does need to rest and it needs to recuperate and, you know, like, you know, to give your best you you need to to rest a little bit, too, and turn your mind and your body off.

Correct. And that's That's what happens with fibromyalgia patients. They can't rest. What a vicious cycle. I mean, it's It's a It's a big part of the challenge. This So, this patient acquisition process that you have, you actually do the interview of the 90 minutes. So, that that takes part of that hardship away from the clinician, too, I'm guessing, along the way, like, when you're when you're acquiring those patients in the door. Is there a process around that or does that still happen with the clinician, the intake?

21:00 Oh, no, they we have either a PA or an MA will handle that. Yeah. Okay. A nurse actually a nurse is nurses are qualified to handle that, but initially we'll have a nurse do the patient input, a follow-on appointment where we start to look at what care paths we want to start down. That's managed by a PA or an MA and may or excuse me a nurse practitioner, a PA, and then the physician oversees that. In In most states, I mean those you know, we need to involve the physicians have oversight of everything and obviously our goal is our definition of success is a little bit different.

We actually want to see how many of them we can roll out at the end of the equation, we'll keep them going through. So, you have a telehealth platform that's a revenue stream, right? Along that line. And then I'm sure the data collection process has a lot of value to, you know, a lot of other stakeholders in in healthcare as well, right? Not just, you know, the the data architecture itself, but pharma, research, all those things. It's the financial institutions tracking these verticals want all that information.

Hospitals want that information. Businesses, organizations that self-insure certainly want it. A lot of A lot of businesses are moving towards value-based care where they'll actually come in and say, "Hey, take all our fibromyalgia patients. You manage them and make sure you do it well enough to have a profit at the end of the day and everybody's happy." So, you know, all those things are at play. One thing you mentioned earlier is the patient acquisition process. A lot of that, you know, we'll be pushing out this content that we create that will be, you know, our assets and hopefully it gets legs because it's good. You know, we benchmarked a lot of You know, I would say we benchmarked at least half of the stuff in the space, a little bit beyond using Courier type with no kerning as far as how advanced it was.

Right. As far as being good engaging, you know, content. So, we'll do that, but we, you know, we do spend on media to send people into some of the studies that we're running. We have investigators who run studies and do this for a living that help us design experiments to make sure, "Hey, let's go figure out whether or not this works." So, I mentioned at the beginning the that head-on collision, having that challenge, getting into bioelectronics, and that really, you know, came full circle with all this when we figured out there are a lot of things out there that work and that could add value and can be stacked on top of each other. Can't put Cymbalta on top of Lyrica on top of off-label application of gabapentin and hope for the best.

23:49 Right. However, I can see that there's some interesting things happening with red light therapy and its ability to increase ATP production. So, without getting into the technical details, ATP is the is the little batteries that run your cells. Very important. It's part of that process. We need them when we're healing, we need them when we're trying to overcome challenges with our immune system and things like that. We need them if we've got issues with diabetic neuropathy. They can reduce inflammation very quickly. It's keenly interesting. So, we'll direct some people towards those studies and getting them into those studies populates, you know, gives us the opportunity to tell people what we're doing and why we're focused here.

And then, we're starting in six states. We'll roll out sequentially in a phased approach across those six states. We're headquartered in Indianapolis and great environment to to be in telehealth care from and also favorable tax rate. So, that all worked out. But, that gives us the ability to um really scale this. I mean, we can scale geographically, you know, sales numbers of hundreds of millions of dollars as far as the number of people we'll be employing in 125 or 35 nurses in 4 or 5 years and then scale up from there. So, it's a pretty significant opportunity to scale and we've got everything we need to do to do it efficiently. And having those two revenue streams certainly helps.

Absolutely. And you know, that's the business model part of it, but you know, going back to the friction you're removing is, you know, an access to information for a patient that's really challenged with finding a solution, right? A lot of pain, losing sleep, not feeling well, you know, missing work, not being able to take care of families. That's a that's there's a lot of friction in you in the patients' lives as well. Sounds like clinicians are continuously sort of guessing what treatments to and how to diagnose and what to do for what specific treatment.

So, another great place for clinicians to collaborate, by the way, as well, right? And then since you're going to be data-foundation-based, you'll be able to do a couple things with the data. Number one is, you know, measure what works and what doesn't work in certain situations and having that large data architecture will allow you to do that. And then you're building, you know, an asset with data that and I'm sure that there are lots of institutions in America, whether they are on the drug side, the health care provider side, the insurance side, that all would find the information you're creating of value. So, like, what a great business model, clinically providing, data providing, and taking care of patients at the same time.

26:38 Sounds like everybody's kind of a winner in the in the ecosystem. God, from your lips to God's ears, Terry. But, you you're absolutely correct. I mean, the we do have a secondary market for the information. Obviously, all of it is no patient ID information. It's all Sure. You're from HIPAA, but but the informatics we derive from it have almost, you know, they have value also. So, here's what we learn from this information can be really important. But you know, we want to do a great job providing patient care and we go at it from a little bit of different perspective because um uh our emphasis is not necessarily where the health care systems emphasis is. And we all have deep understanding of systems thinking. I mean, that would this is a gaggle of engineers, software developers, and statisticians, and analysts that work on this stuff at the behest of You're you're building Yeah. Yeah, you're you're creating access to health care that a you know, again, just

There's so many specialties in our health care environment today that as you stated earlier take months and months and months to get access to. And now they can go online and get on a platform and have engagement within 24 hours. So, you know, that's a big relief because just being able to talk to somebody is 90% of the psychology game versus having to wait 6 months and not find out anything while you're suffering with pain and and sleeplessness. So, you know, all those things kind of play into well, speed to care, access to care, you know, what a great story. And I'm just I feel privileged to to meet you today and and you know, we wish you and and Rapha nothing but the best. And if there's anything that we can do from a Zero Friction or a RevRx AI perspective, we're here to help.

Terry, I appreciate it immensely. It was really good to have a conversation. And you drew out some some interesting thoughts along the way. so absolutely we'll be reconvening and I appreciate the time. Great, thank you, John. Good luck to you. That's a wrap on Zero Friction, the show built around one simple idea. Remove the barriers and the revenue will follow. If today's conversation was valuable, please subscribe and share it with somebody who needs to hear it. That's how we will grow this community. I'm Terry Coutsolioutsos Revenue Architect powered by AI. Come find me at my website myrevRX.com and let's talk about what friction is costing you and your organization. Until next time, keep removing the barriers and keep the revenue flowing.