Unifying Research S2E5 - Tribal Health & Research and Patient Michele

In the fifth episode of season 2 of Unifying Research, I speak with a Muscogee Creek Native with Cherokee and Pawnee ancestry, who is working to bring tribal healthcare to the forefront of modern medicine. I also speak with a colleague of mine who shares her incredible story of cancer diagnosis and treatment, which recently led her to a research study opportunity that she explains was a life changer.

My research expert guest this episode is Kelsey Powell. Kelsey is the CEO and Founder of PARTNER BioResearch, which is focused on advancing a new model for clinical research for Native American patients, healthcare providers, and research sponsors. Kelsey explains the gaps and issues surrounding research in tribal healthcare areas. To say Native Americans are underrepresented in clinical research is an understatement, and Kelsey passionately shares the progress she's been making to improve research access.

My patient guest this episode is Michele Baptista. Michele is a research expert herself and shares her unique lens as a research participant. She openly and honestly shares her journey of cancer diagnosis, treatment, and recovery that eventually led to a research participant opportunity. Her story and her attitude are so encouraging, and she shares everything with a calmness that makes you want to keep listening. 

Additional resources:

• Connect with Kelsey Powell on LinkedIn
• Connect with Michele Baptista on LinkedIn
• For more information, data and stats on Tribal Health and research, visit the National Indian Health Board website
• Learn more about Not Our Native Daughters
• Learn more about MMIP
   
   
• Learn more about Univo's partners working together to bring the patient's voice to research:
• Clinical Trials For All
• Savvy Cooperative
• Inspire
• Children's Flight of Hope
• The Patient View
• AAHRPP

Transcript

Intro

SPEAKER_00 0:08

Hello and welcome to the second season of Unifying Research, a podcast about bridging the gap between the business side and patient side of the research industry. I'm your host, Justin Osborne. I have the privilege of working with an amazing group of people at Univo IRB, the fastest growing IRB in the industry. At Univo, we believe patients should have a bigger voice so clinical trials are better and more accessible for all. So we're using our network and platform to not only give patients a voice, but also share industry expertise for those of us working to improve research from the inside. Each episode will have two conversations, one with a research professional discussing their area of expertise, and the other conversation on the patient side and experience with research. My hope is that these episodes will spark further conversations, creating opportunities to bridge the gap between patients and research. Quick disclaimer before we dive in: the opinions you hear on this podcast are our own and don't reflect those of our employers, past or present. We could be talking about research, data, regulations, or even laws that affect your organization, but this is not legal advice. My research expert guest this episode is Kelsey Powell. Kelsey is a Muscogee Creek native with Cherokee and Pawnee ancestry whose work centers around bringing tribal healthcare to the forefront of modern medicine. She's doing this by building scalable infrastructures, improving patient recruitment, and creating AI-powered tools and platforms to increase access to native populations. I didn't know too much about tribal healthcare and its limited access to research, but Kelsey is not only patient in her explanation of the situation, she's incredibly passionate about this topic and the work she's doing to improve it. I learned so much in our conversation, and I know you will too. So without further ado, please enjoy my discussion with Kelsey.

Kelsey Powell

SPEAKER_00 1:58

I am so excited to have Kelsey Powell with me on the podcast. Kelsey, thanks so much for hopping on.

SPEAKER_03 2:03

Yeah, thanks, Justin. Thank you so much for having me today.

SPEAKER_00 2:06

Yeah, so before we get started, do you mind giving our listeners just a background on yourself and how you actually got into the research industry?

SPEAKER_03 2:16

Yeah, absolutely. So I have 15 years of experience in hospital and clinical operations. I've been a manager in some clinics at hospitals, surgery centers. And about six years ago, I got into research as a clinical research coordinator. And then I became a director of clinical research. And in parallel, at the time, my daughter was getting sick with Addison's disease. At the time, we did not know that she had it. So went through a couple of years with her being sick in and out of the hospital. And come to find out there was a clinical trial an hour down the road the entire time from us. So while this happened to me personally, on the flip side, what I was working, I noticed there was no Native Americans in research. So we start to think about why those things happen, why that why we are excluded. And so that's part of the reason why I'm here today. I decided that I was tired of seeing it on the personal side and tired of seeing it in my professional life, and I needed to do something about it.

SPEAKER_00 3:14

Well, wow. Yeah, that that's incredible. So you you said there was a a clinical trial right down the road, and you you just never you found out about it after the fact.

SPEAKER_03 3:23

You didn't know during No, we did know during so we started off um through tribal health when she was sick, and the first thing that they told us was she was constipated or she had this or she had that. And and I kept trying to tell them, no, a child doesn't get sick every day and hurt in the same spot for two years. That doesn't happen. And yeah, come to find out they were doing an Addison study down the road uh from us the entire time, and we were never told about it.

SPEAKER_00 3:48

Wow, that that's what okay. Thank you, Kelsey. First of all, thank you for for going through that. I I want to unpack all of this. There's a there's a lot, obviously, there. And again, we are going to talk about um sort of Native Americans in research broadly speaking, and then we'll kind of drill down. But first question, uh, most important, how is your daughter now?

SPEAKER_03 4:09

She's doing great now, thank the Lord. Um miracles happen every day. Uh, but we almost lost her. It was very, very scary. Um being pulled into a room and saying, hey, we need to give you a mortality rate. It's something you never want to hear as a parent. And and what's sad is we just lost our stepbrother about a year before that. So it was very tough. And uh, but we made it and she's great now, and she's way taller than me and and 14, and and we're going through an emo stage right now. So good times.

SPEAKER_00 4:40

That's amazing. Well, yeah, that's thank you. That's that's great to hear. I'm glad that she's doing well. 14. That's that's a fun, fun time. So, so Kelsey, uh help help me understand. You had mentioned that you went to what would you call it, tribal health?

SPEAKER_03 4:55

Yes, tribal health.

SPEAKER_00 4:56

So what what what does that mean exactly?

SPEAKER_03 4:59

So every tribe is a little different. So they either go through IHS, through the government, um, to use the health system that they've created, or they're called 638B. So what that means is every tribe has their own health system if they're 638B. So they governance their own hospital, they staff their own hospital. So it's almost like an outside world going through these hospitals or these health centers because it's their own system. It's not connected to a major health system like the Mayo Clinic or something like that. They don't have the modern technology. I mean, we it's nice, right? But clinical research is completely unheard of in tribal health. It's it's a foreign, foreign language. Wow. So where where are you located again? I'm actually in Tulsa, Oklahoma.

SPEAKER_00 5:45

Tulsa, Oklahoma. Okay, so so the the tribal health sort of that your health system there is completely, you said independent, sort of cut off from any of the traditional, I guess what everybody else thinks of as like the US-based healthcare system.

SPEAKER_03 6:02

Yes, yes, it's different. So while we use the same type of technology in some areas, some tribes don't even have telehealth still. So it just kind of, yeah, it just kind of depends on where you're going now. The hospital system that I have here is very robust. We've got hominology, we've got cardiology, uh, endophenology, all of that. But however, clinical research is not a thing. It is unheard of, it's it's not available. So it's and it's not that it's not there. We could always join a clinical trial. The problem is though, Justin, is nobody ever told us about it. So why are these things happening? Yeah. So we could go and join it, right? It's just that we were never told about it. And even working in 15 years of uh hospital and clinical operational experience, when I joined research, it was brand new to me.

SPEAKER_00 6:53

Wow. Wow. So I I guess just and I'm trying to for for people listening to this stuff, I'm trying to like paint a picture of the logistics of this. You're saying this stuff was right down the road. I mean, it seems like your tribal health uh hospital that you were, you know, working at or knew about, that you went to, I mean, physically, you're saying that you could drive a couple minutes down the road and and there were hospitals performing research, you know, having clinical trials run on Addison's disease and anything else, and you just there's no visibility, no connection, nobody talks. Like what is okay, yes, I this is wild. So help me understand the I guess the the infrastructure with the tribal health stuff, is it like all the physicians, all the nurses, all the doctor, everybody there is within the tribe. They you know what I mean? Like they they all or do people from outside of the tribe come and work there?

SPEAKER_03 7:51

They can. Uh typically, um, yeah, anybody can work there. However, typically it's citizens that are typically hired through the tribes. And but and it's just it's not even just the tribal health down here, it's it's really healthcare access, if if if I'm being quite honest. Um in rural areas, it's the same, it's the same thing. We don't hear of clinical research. And and typically, even if we do say we like I'm from Claremore, which is about 30 minutes outside of Tulsa, something like that. I mean, that puts you an hour and a half away from any clinical trial that's near you. So, how is that feasible for patients to join a trial that's an hour and a half away and they've got to be at the clinic three times a week? There's no way they can do that. So it goes back to rural health care access. It goes back to tribal health care access. We just do not have the same capabilities or the same access that other people have. I mean, you see these clinical trials where they're in Boston. Well, we live in Oklahoma. How the heck are we gonna get to Boston this time so we, you know, um they're just not made for rural health patients. They're not made for tribal health patients, they're not made for people that live in different states. It's really for people that leave live on the West Coast or the East Coast. And I think that that's sad.

SPEAKER_00 9:07

Uh it's absolutely sad. Yeah, no, this is, I mean, again, we we talk about this in research a lot, as you know, about the sort of uh the access to research is a is a major issue right now, not just with with Native Americans, but I also I do want you to sort of help uh draw this out a little bit more because uh there the implications with this population specifically is is wild to me. But kind of can you speak to that? Like give me some of the the numbers, I guess, if you can, about this population and clinical research in general, and and then we can talk about the implications of that.

SPEAKER_03 9:44

Yeah, absolutely. So Native Americans represent less than 1% of clinical research trials. So for instance, I read a data set about a month ago that there were 22,000 patients in an oncology study from 2000 to 2023, and there were 36 Native American patients out of 22,000 patients. Wow in this study. Yeah. So we're yeah, we're very underrepresented. In fact, 63% of trials don't even list us as an ethnicity.

SPEAKER_00 10:15

Wow, interesting. So, so okay, so that that's crazy, right? That it's such a uh underrepresented population. What what then, I mean, what what are the obvious, I guess, sort of um implications of this? And what it what does this mean for not just research but healthcare? I mean, some of this stuff people I think could probably draw this, but I think it's important to kind of say it out loud.

SPEAKER_03 10:39

Yeah, absolutely. So this is what I I always ask people, think of it this way. If we are treating Native American patients in tribal health care, what are we basing it on?

SPEAKER_00 10:52

Like, you mean what what are we basing the medicine on?

SPEAKER_03 10:55

What are we maybe basing the medicine on? Because it's not native health, it's not native science. So how are we treating these patients? Well, we don't know how we're treating them, right? Because we're just giving them whatever. So if we don't know that's safe, I mean, that's like you know, giving a dog medicine that's been tested on a cat. I mean, it doesn't make much sense, does it? Yeah. Um and the problem is is we have a different variance than other ethnicities, just like African Americans are predispositioned to sickle cell disease. We're predispositioned to diabetes. Eli Loki is one of the biggest manufacturers of GLP1s, right? And they're not tested on Native American patients, and they're the number one user of that medication. Wow. So I mean, make that make sense.

SPEAKER_00 11:42

Yeah, well, I mean, yeah, yeah, there's clearly some uh quite a bit of disconnects here that that is a that should be alarming and concerning for anybody um that just looks at this data and and listens to this, right? So, so just for people who are not necessarily uh this deep on the the scientific side, the variants you're talking about with Native Americans, can you kind of talk? I mean, you mentioned diabetes, but kind of talk a little bit more about that if you can, just in terms of helping people understand what, again, what all what this means?

SPEAKER_03 12:13

Yeah, so really the two big factors of what that means is number one, uh, we don't metabolize medication the same. So we have a hard time, yeah, metabolizing it. It doesn't affect us the same way. We also have a hard time absorbing alcohol. So I'm sure a lot of people have heard that uh Native Americans like to drink, and that's really based upon the borrow alcohol study that happened. I don't know if you're familiar or not.

SPEAKER_00 12:39

I have not, I had not heard about that.

SPEAKER_03 12:40

Yeah, so the borrow alcohol study. So I can't remember what tribe, so I'm not gonna sit here and say uh a tribe because I don't want to sit here and lie, but there is a tribe, very small tribe that they went to study. And this tribe, and I'm I'm pretty sure it was like less than 20 people in this tribe, very small, very small. And they were all drinkers. And that's how we kind of got this reputation that we're all alcoholics based upon a small number of people. Now we're labeled as alcoholics. So that's how that got started. That was based on research as well. So if you think about the historical mistrust and the historical issues that we've had, why don't we trust research? Well, there you go. There's a few reasons right there. The Habasupe tribe uh incident with the biomarkers study 1990, uh the habasupe tribe and the Grand Canyon. It's the waterfalls that you see all over TikTok, I'm sure. Uh if you've ever seen them in the Grand Canyon, but yeah. The Habasupe were approached by Arizona State University and asked to do a biomarker study to see why we were predispositioned to type two diabetes. And a few years later, one of the Habasupe tribe citizens was in a class at Arizona State University, and they were going over how they used the biomarkers, not only for that study, but they studied mitigation, they studied schizophrenia, they studied like IVF treatments on these biomarkers, and they were obviously not consented that way. So they were actually sued uh for $750,000, and they won the Java Soup A1. And since then, we've been pretty much wholly out of research since 1990.

SPEAKER_00 14:22

Wow, that's crazy. I I have not actually heard about that study or incident, which is in and of itself kind of wild. Maybe I'm I'm um sorely under undertrained and under-educated, but that I have not heard about that example. But that is a I mean, 1990 wasn't that long ago.

SPEAKER_03 14:40

It doesn't seem like that long ago at all. This trial actually just ended a couple years ago.

SPEAKER_00 14:46

That's crazy. Okay, so so obviously, I mean, I I could ask you what the sort of uh current barriers are, but I I as you kind of mentioned, there's there's obviously a long history here of of mistrust, distrust, all this stuff going on with between Native Americans and and the US government and and all this other stuff. So I guess can you can you kind of help us understand, I guess, where things sit now and what what are the sort of biggest challenges? Because again, you know, it's not like you're saying that you can just fix these, you know, so many years of of issues that have happened between the two. You know what I mean? Like there's so much here. It seems like a really big lift to fix this problem because this is a symptom of a much larger history-long issue. So like where where do you sit right now with this?

SPEAKER_03 15:43

Yeah, so partner bioresearch, um, that I'm the founder and CEO of, we believe in infrastructure. So we start with education, education in areas where people don't even know what research is. I started this over a year ago. Yeah, and we started to deploy teams out to like cancer centers fairs or health fairs, powwows, these types of places where these patients are gathering for their culture and what they believe in. And we started going to talk to them about research. Hey, this is what research is. We're real people, we care because the problem is is research is not, it doesn't have to be a scary thing. The people behind the research are my friends, my who I consider some family. They're good people, right? They care. So how do we get to show the public that? Well, we've got to be out in the community. It starts with community. So that's what we first said. Secondly, we're now building research institutes within the tribal nation so they can run their own research. Here's prop the part of the problem is this data sovereignty. When you look at the history of trials or the history of research in general, whether it be environmental, whether it be healthcare, clinical, we don't own the data at the end of the day. So what are you giving back to our community? Say you come in and it's helicopter research, is what they do. They drop in, they grab their stuff, and they get out. So we call it helicopter research. Well, if we want to be a part of the community and we want these patients to trust us, then we have to be a part of what they're doing. We have to respect it and we have to understand it. And we're going in there and trying to talk to them like they understand what the heck we're talking about. I don't even understand what we're talking about sometimes, you know? I mean, you expect these patients to understand what trials.gov is. It's insane to me.

SPEAKER_00 17:38

Yeah, that's a good point. That's a good point. I mean, I I'm I'm happy to hear that everything starts with education, right? That you're you you kind of that's the you got to build a foundation, right? Of and that's how you build trust anyway, is to is to actually educate people on what's going on and why this is being done and why it's important. I mean, it sounds like with the data sovereignty and and the helicopter research that you described, that that's sort of a a different kind of lift to get those things to connect. I I am curious though, within because I'm again I'm I'm only I'm not familiar with travel health, I'm not familiar with that world, but within the sort of uh US-based, you know, uh traditional clinical trial model stuff, uh I understand, I guess, the where patients are with how much they trust their healthcare providers. And and we talk all the time that, you know, if your PI is your actual the PI of the research study is actually your physician, people are much more likely to say yes to the research study, those kinds of things. So within the tribal health community, it what does that relationship look like with just the traditional healthcare setting, I guess? And then how does that translate to possibly connecting better to research?

SPEAKER_03 18:47

It's well, it goes back to all my, I don't want to say all minorities are the same, because that's not the right way to say this, but a lot of minorities, I should say, trust who they look like, right? And that goes for anybody. I mean, me too. I'm gonna trust a woman probably, you know what I mean, over a man just because it's a little more sensitive, things like that.

SPEAKER_02 19:07

Yeah.

SPEAKER_03 19:07

So what we believe in is we've got to A, get more providers that look like people, right? To get in there because they're gonna trust them. It's the same thing in my community as it is in the African American community. We're seeing, I can't speak for the Hispanic population, but those are the two that I've seen. And so we're looking right now at programs to where we can interest, I guess, physicians in the Native American population to go to medical school because we are paying for these things to open research institutes to have these physicians in here. Um and I think the more people will be apt to come in to the doctor if, you know, Dr. Jones, who they've trusted for 30 years, says, hey, I think that this is exactly what you need. Because the problem is, Justin, I started doing this too because people really truly need this in my community. They need it. It's not, it's not a matter of, it's not a question anymore. I mean, for instance, like uh wound care right now in Native American health care is so prevalent here in Oklahoma that we're seeing 150 patients a day in some clinics. And I'm I'm like, why, why are we not, why don't we have clinical trials down here when we can easily, easily put patients in trials? I'm giving you, I'm giving you these patients. Where is where's the trials at? If you if we care about diversity, if we care about rural, if we care about health equity and whatever we put on posters that day, um, then people will come down and give trials to these patients. It's just they need it right now.

SPEAKER_00 20:42

Absolutely. I mean, yeah, so okay, I'm I'm gonna, I this might be a simple question, maybe uh you can kind of help tease this out because I I'm thinking through my my question here for you, and and I don't want to make it sound like it's just too simple. But my question is say a big pharma company wants to do a multi-site trial across the US, is there an option for them? Can they just go to all these different tribal health hospitals and say, hey, we want to use you as a site, just like we use Johns Hopkins or anybody else? Or or like well, I guess if not, what why why wouldn't they or why can't they?

SPEAKER_03 21:21

Well, if they did, I would love to be in the parking lot to watch that go down. Uh I'm just like, well, you know, theoretically, they obviously could walk in there, but no, they're not gonna be able to make that relationship, unfortunately. It's not really how that works. Though these relationships are built years ago, these relationships are built based upon the times that we've been to a powwow together or that we've seen each other in Walmart a few times. You know what I mean? This is not a hey, bud, how are you doing? Let's run trials in here. It's no, they don't they don't play that game. And to be quite honest with you, there's some areas that I not I have. Even been welcomed in. And I'm I'm a Skogy Creek native. I've got ancestors from Cherokee and Pawnee Nation. And I mean, there's some tribes uh in different areas across the United States that they don't know me or they may not like my tribe. I mean, it's so uh yeah, there's in tribes here in the United States that don't like each other, and to this day, um, if they run into each other, it's they're not very nice to each other. So I won't name any names because I'm not starting to fight.

SPEAKER_00 22:30

Sure, sure. Well, okay, so so you're saying within, I mean, again, I don't I don't know how many tribes there are and how many different um what the tribal health network so you're it's if that's the case then so these these hospitals, these tribal health um, it's not like it's a network. It's it sounds like they're basically created and stood up by each tribe almost independently, or or do some of them work together even amongst tribes?

SPEAKER_03 22:57

No, they're all independent. So it's yeah, and there's five hundred and seventy-five tribes in the United States.

SPEAKER_00 23:04

Oh, thank you. 575, okay.

SPEAKER_03 23:06

Yep, yep.

SPEAKER_00 23:07

So there's 575 independent tribal health. Yes.

SPEAKER_03 23:11

And there's I think I think yes. Yeah, and then there's 660, I believe, in Canada.

SPEAKER_00 23:18

Wow, okay.

SPEAKER_03 23:19

So And they're the First Nations, is what they call them.

SPEAKER_00 23:21

What do they call them?

SPEAKER_03 23:22

The First Nations.

SPEAKER_00 23:24

First Nations, okay. So that's wild. So that is that is quite the lift to not only build, and you said you're you're big on structure, infrastructure, that kind of stuff, and and it sounds like that's yeah, man, I can't even imagine how you would how do you approach, how do you start research within the tribal health communities and within the tribes if you're basically not able to I guess once you build one, you can mirror this sort of operational components to a certain extent, but even still, scalability of research is uh it's all about data, it's all about numbers. So if you have to independently approach 575 groups to say, hey, you should run a trial, you should run a trial, even then you're saying maybe you couldn't collect all the data and and gather together, or that's not the only thing that we're doing, Justin.

SPEAKER_03 24:22

In fact, I didn't really plan on telling everybody this, but my people, I guess, is gonna let me. So I have partners now. And not only do I have partners, one of my partners is going to help us make one of the biggest dents in health equity that North America's seen in modern history. I truly believe we're getting ready to be backed by a major university, a major health system. And the company that we're working with has created a device that I believe will change healthcare as we truly know it. Um, it's about to be out on Q1. And I really wish I could say a little more, but just think of it this way we're gonna be able to take labs at home right then and right there. I'll just say that. So very exciting. I also have another partner partner that has the capabilities of putting ambulatory centers in tribal nations. So we're not just creating research, we're trying to help these patients have healthcare access because that's what it's about is these rural healthcare patients that don't, these patients in WeeWoka, Oklahoma that have to drive an hour and a half to get a lab. Well, no more. They don't have to do that.

SPEAKER_00 25:32

So that's awesome.

SPEAKER_03 25:34

Yes, we're excited. We're very excited. And but it starts with infrastructure. The question, the answer to your question is infrastructure. We want to be able to give them the tools that they need to create revenue streams for the tribes, create research opportunities, create jobs. Like we're, I wish I could say this right now. We're getting ready to work with two tribes in Oklahoma. Okay, and one of them is going to be opening three clinics, okay? And we're putting research in every clinic, and we're training 60 people to become accredited red registered clinical coordinators, research coordinators, and PIs. And we're gonna run trials out of them. Yeah. So we've got a lot of exciting things going. There's a lot of Native American patients that are ready to go, ready to be in research. So it's not just, yeah, it's not just, hey, we may have some. We've got patients ready to go right now. Well, you know, we're excited.

SPEAKER_00 26:31

I almost imagine that to your point, I and I know you briefly touched on this earlier about minorities in in general, not to say obviously everybody's the same, but the idea that if you know people look like you, you trust them more, that's absolutely true, obviously. But it almost feels like within the tribal health, if you build the infrastructure, the the culture, it seems, would lend itself to even more people being interested in research there, because if you actually bring it to them, there you know what I mean? Like within your within their own tribe, there's so much trust, it seems, and that's that's such a big part of their of who they are, right?

SPEAKER_03 27:10

Yes, like if that's the biggest pillar.

SPEAKER_00 27:12

Yeah. So if you build that infrastructure there for them, bring the research to them, like you're saying, you'll have better uh I mean that that's the issue now, right? And in in research in general, we talk about the biggest hurdles being recruitment and retention and all that stuff. We can't get enough people into the trials, right? Now most trials don't hit their enrollment goals. I I feel like if you Yeah, right. So like that I feel like that number would be uh much lower in the in the tribal health areas.

SPEAKER_03 27:41

Is that well it would be it would be not only lower, it would blow them out of the water. And here's the thing about about recruitment. And I I've been saying this for years and nobody wants to listen to me, but I'm doing it and it's working. So I don't know, maybe we're doing something right. But here's the thing about recruitment. If we're not out in the community, if people don't know you, they're not going to use you. Especially you, you think about the United States. And yes, people in you know, Boston or San Diego or New York, they may know who you are, they may have heard of you. But if I go ask anybody out on the street who a pharmaceutical company is, they literally look at me like I'm nuts. In fact, when I first got started here in Tulsa, I had a lot of people that really kind of thought I was crazy because they're like a little trials here in Oklahoma. Like, there's no way. And we've never heard of this. And the more that I've told people and educated them, that they're starting to understand the need for it. And I didn't even plan on really starting institutes necessarily. I just wanted to give them the tools to go to research. But what we found was is it is about infrastructure. That's the first step. And so we've decided, you know what, let's let's do this. Let's open these research institutes, let's bring it to them. Because patients, and another thing is patients can't afford to travel like that here. Right. They don't have the money, Justin. They just don't.

SPEAKER_02 29:07

Yeah.

SPEAKER_03 29:07

And I mean, sometimes they barely can afford to drive 45 minutes to the doctor, let alone, you know, an hour and a half, three hours and stay the night in a hotel, get reimbursed. Well, they don't have that. And that's another thing, you know, pharma reimbursing patients, they're that's not feasible. Um, or I just yeah, we're we're creating so many burdens around recruitment for no reason.

SPEAKER_00 29:33

Yeah, no, I I love all that. I mean, I I agree that you have to you have to earn the trust and then you have to go to the people. You know what I mean? It's not I think a lot of times, especially the bigger companies, do just try to rely on their their brand, right? To to draw people in and people will be interested just for the sheer fact that they know a name or a company name or whatever, but that's not that's never enough to really build.

SPEAKER_03 29:58

Well, it's not only not enough, it's not even true. Um they're living in a fantasy world. They really are they're living in a fantasy world. And like, for instance, our AI platform that I've built, that's how I got started, is I built an AI platform for this. Okay. It measures 2,000 reasons why patients could not go to clinical trials. So, what are our burdens? What are we looking at? So, for instance, it'll come back and say, Hey, Justin, we're gonna see the fact that this patient's gonna have a hard time with transportation because you're making them come here three times a week. Let's do this instead. So it gives us the mitigation. So instead of, and it doesn't compromise the science. So, how do we reduce burdens without compromising the science? Yeah. So it's not necessarily protocol building, but it but it almost is it's a pre-protocol intelligence tool. And that's awesome. Yeah, we can look at uh what the burdens are before they happen, and we can shape now protocols around patients without compromising the drug and the efficacy of it.

SPEAKER_00 30:59

That's amazing. But you know what, to that point, the only way you can build that kind of tool is if you understand the community and the people, right?

SPEAKER_02 31:06

Yeah, that's correct.

SPEAKER_00 31:09

Yeah, yeah, that's that is number one. I okay, so I have another question because again, I don't know anything about this, the the tribal health side of healthcare in general. When you're talking about reimbursements and and healthcare in general, so you're you know, you you set up these this infrastructure for the tribal health hospitals to conduct research, for example. Do you I mean, does CMS apply? Do you uh do those hospitals still get reimbursed the same as any other US-based hospital does? Like how does that the finance stuff work?

SPEAKER_03 31:40

Yes, that's correct. They do get reimbursed, same thing.

SPEAKER_00 31:43

Okay, so everything's the same system.

SPEAKER_03 31:45

Yep.

SPEAKER_00 31:46

So then when you're talking about you mentioned data governance earlier in terms of the research data and who owns it and all that stuff, what what is the vision of you get research going and you're you're now able to have an infrastructure of a functional way to conduct research with this population, which is necessary. How do you envision this sort of I guess changing? I mean, it's all going to improve healthcare, but how is it gonna change healthcare in your view?

SPEAKER_03 32:15

Yeah, so what our platform actually does as well on the flip side with the tribal nations is so say we're in a they're in a regular staff day or clinic day.

SPEAKER_02 32:24

Yep.

SPEAKER_03 32:25

And what it'll do is if there's patients in the room and the patient automatically is eligible for a trial, it scans the healthcare record. And if it's we're eligible, it'll tell us right then and there in the room. So we can start identifying these patients through that. So, like for instance, one nation that we're talking to right now that we're hopefully about to bring on has 110,000 patients.

unknown 32:47

Wow.

SPEAKER_03 32:48

So we'll be able to, yeah. So like right now, based upon just the tribes that we have in our circle, right now we're looking at about 2 million patients right now. And we're just getting started. That's so we've got yeah. So we'll be able to scan, obviously, the healthcare record system to see, but as far as data governance, the tribes own it. So yes, like say somebody like uh this is just an example. This is not saying anything. Uh like say if somebody like Sanafi comes in and they run a trial, what we'll do is Sanafee will be able to get that data from the trial, but the tribes own it. So after that, all that data that they collect, they own it. So they can either they want to sell de-identified data, that's great. Let's do that. Make some money for them.

SPEAKER_02 33:31

Absolutely.

SPEAKER_03 33:32

And they get to get revenue off of the trials as well, just like a regular clinical research site. The only thing that our services are is the platform and we facilitate their accreditation, we facilitate their certifications, um, all of that. We take care of all of that for them.

SPEAKER_00 33:47

So, so let me ask you this. How many I I I I love this. I love all the the systems you're putting in place and the infrastructure that you're building. This, this all you make it sound easy. Like obviously, I know this is a huge undertaking, but from from the you're talking about records, I I assume that the the tribal health hospitals have their own EMRs. I mean, do you use the same EMRs as the hospital down the street, the the US-based hospital?

SPEAKER_03 34:13

Or yeah, that they do actually. They do, okay. Okay.

SPEAKER_00 34:18

So if you're on Epic and you're are are you are they also in like, you know, care everywhere? Do you share, do they share records with each other?

SPEAKER_03 34:26

Yeah, so we we will integrate with them if they have Epic, if they've got uh like e-clinical works, it just depends on what it is. We can integrate into anything, we just have to get the licensing for it, not a problem. But we, yeah, so the system we've built is built to integrate with whatever licensing, CTMS system or EMR system. Like right now, we even have a hospital in Turkey that really likes this system too, because there's communities like outerlying their community, and they're hard to reach, hard to get to, they're rural access areas. So they want to do the same thing that we're doing over here in the United States in Turkey.

SPEAKER_00 35:04

Interesting. Well, that's really cool. Well, yeah, I mean, it it is that does sound like a nice, at least that bridge has been built in terms of sharing records and data. Because obviously it sounds like there are people like yourself, right, who um who may go to tribal health hospitals for for certain things, but may go outside of the tribal health system for other things, potentially. And obviously, for for if you're doing a research study, having access to all applicable data sets for you know, medical records from an EMR, for example, wherever they happen to go to, you know, to the doctor or hospital, like that, it sounds like that infrastructure, I guess, is is already set up. So that that's a huge head start, I feel like.

SPEAKER_03 35:48

Yes, it's been an undertaking, though. I won't lie to you. Uh I actually built the entire front end of the platform by myself. So that was a huge undertaking itself. I even wrote my own patent during this time. I went crazy for a little bit, my hair, and I got some gray hair over it, but that's okay. But yes, it was a huge undertaking, and even building the back ends with uh a lot, it's and a lot to integrate, and and we're still working on it. I mean, this is gonna be something that's gonna be built out over a period of probably about a year next year. So we've got an MVP, we've got all of that going. But you know, as far as getting license through everybody, that's gonna be an 18-month build. So we're just always, yeah, always upgrading.

SPEAKER_00 36:33

That's awesome. That is exciting. I I'm glad that this this work is being done, uh, of course. And uh, you know, it sounds like you are I don't know, you've already done so much work into this. Do you foresee any roadblocks that you I guess can't control? I mean, do you do you see a situation where you go to set up the infrastructure and a tribe or or any other partner outside says, no, we just don't want to set this up for for whatever reason? Like I'm just trying to understand what the some of the bigger issues are, you know what I mean?

SPEAKER_03 37:07

Yeah, no, yeah. I mean, I've had a lot of roadblocks. I'm not gonna lie to you. I first off, I'm a single mom and I, you know, was have two older daughters, 18 and 14. And so I was a young mom. I started off not in the best spot. So I've already come from a hard upbringing. And so that was been a roadblock, even getting funding to get started with this. You know what I mean? Um to getting told no so many times, time and time again. There's been times that I've walked into a tribe or you know, messaged somebody on LinkedIn being friendly, and it's been a no, you know. But every time there is a no, I've gotten a yes. And so that's kind of kept me going. And I'm not gonna say kind of has kept me going. And it's been hard. There's been very many nights, Justin, that I have sat here and just cried and cried and cried, but it's worth it. And I think that we're getting there. And the more every day that I do this, the more that I'm very excited for not only my team and my partners and myself, I'm excited for the world to see this and because it's about to get really crazy. And I cannot wait to introduce this to everybody here and probably the next month. Um, in fact, Mate, but we're supposed to talk tomorrow. So actually, maybe this week. You never know. Yeah, yeah, yeah.

SPEAKER_00 38:39

That's exciting.

SPEAKER_03 38:40

Yes, it is so exciting, and they're amazing partners. And I already have one partner that I can say, and that's uh clinical research site solutions. They're gonna be our vendor for uh accredited training, Alicia Moore and her team, she's amazing. So I just want to give her a shout out today. That's awesome. She's she's awesome, and uh, we're very excited. She's going to be going into the tribes and training them actually with us. So super excited.

SPEAKER_00 39:07

Yeah. That is very exciting. I love that. I love that. And and I I like that your approach to this is very, what's the word? Uh you're taking a team, team approach to this, right? Like you have to partner with certain people and and and build these relationships with everybody because again, research is so complicated. I mean, you take all of this other stuff you're talking about, with which adds, you know, so many additional layers of complications. I mean, research is just complicated in and of itself. There's so many uh working pieces, moving pieces. The technology aspect now, the data stuff has made it more complicated, all the additional privacy rules and laws, and you know, like there's just so much going on all the time. And then you add what you're trying to do to it, uh, it's it's mind-blowing.

SPEAKER_03 39:56

It's nuts. Oh, it's nuts. In fact, yeah, I do have a team. I've got, and I have to, I've got a chief technical officer who is great. His name is Taylor Poe. And he and I have been going to AI classes together. And just uh yeah, just because I need, you know, I need to be more versed in this. And we're getting ready to, we both applied for an accelerator. So hopefully we both have gotten in. Super excited about that. And then on the flip side, I've got a chief strategy offered, Officer Dallas. He's keeps me in line, let me tell you, keeps me in line. I've got a chief uh marketing team. So yeah, we've got a lot of people on board, and we've got a huge university that we're really working closely with with our partners. So hopefully we're gonna be able to announce them soon. It's almost like a consortium, if you will, of people that we're just kind of coming together and we've had enough. And we we're just we're ready to make a difference, a real difference, not a difference that we put on a poster.

SPEAKER_00 41:00

Absolutely. Well, I I mean, I again I can tell just talking to you how just the excitement and the passion that you have for this is is uh contagious. So I'm very excited to see where this goes for you. And for and for us, right? For everybody. This is this is something like you said that's gonna impact everybody. That's sort of how important this thing is. I I guess I I am curious too, talking about the the different tribes and whatnot. And you said that a lot of the tribes, even you know, amongst themselves, don't necessarily get along. Do you think that research that you have an opportunity with research to build some of those bridges, or is that just not in the cards?

SPEAKER_03 41:40

Like don't get political with the tribes, I'll be honest with you. I to be quite fair, sometimes it can get uh a little political. And I put my face down and I okay. Yeah, yeah. Sure, sure. So that's how I will say, I'll just leave that at that. I would like to see, you know, here's the thing about any minority or you know, Caucasian people, what who whoever you are, it doesn't really matter. If you start fighting your own people, it just is not a good look for anybody, right? It doesn't matter who you are. So I hope that those bridges can be mended, but I am not a mender in that area. So I'm gonna stick to clinical research and do my job and just do that.

SPEAKER_00 42:26

Fair enough. Fair enough. No, I I like it. Um, I totally understand. Uh, and that makes perfect sense. So, Kelsey, thanks for for going through a lot of this stuff that that partner does explaining the infrastructure and your education and and your sort of plan. I mean, it sounds like you have a ton of stuff in the works that are it's very exciting. Anything else that you want to share about what partner has coming up?

SPEAKER_03 42:49

Oh, yeah. I didn't think I would do this today, Justin. But yeah, we do have a lot of exciting things going on. First off, one of them is we're going to be holding a conference here in Tulsa around diversity with a few partners. Um, I do expect that to be in December-ish. So if everybody wants to watch out for that, it's gonna be surrounded uh by diversity issues, health equity issues. It's for researchers, public health, and pharma and it's gonna be a smaller conference. So the quicker that you get the ticket, the quicker you get in. And it is gonna be at the race riots here in Tulsa and an Indian country. So we wanted it to represent a few different ethnicity, the Hispanic community. So we're very excited for that. And then in the very, very, very, very far future, we we have built another system for the MMIP project. So actually, I say so. The MMIP project is the missing and murdered indigenous people. And when I was going around the US and Meeting with tribal leaders about research and uh trying to learn a little bit more about their culture because every tribe's different. One of the ongoing themes over on the West Coast was the MMIP. And there's 10,897 missing murdered women, children, and men over in that area. And I started doing research like researchers do. And we learned that there's no system that connects the local law enforcement, the tribal nations, and the CIA. So there's when there's a report made, there's jurisdictional issues. Nobody knows where who owns what. And if even if the jurisdiction does have officers, there's only two versus this many acreage. It's it's crazy. There's no public transport system down there. So me, I me being me, I was like, how are we gonna, what are we doing? People are getting trafficked, what's going on? And there's it's taking so long to get reports to the right people. Like, why is this happening? Well, this is why. So I decided that I was tired of watching this as well. And we've built a system that connects everybody together. It's got geospatial mapping so we can see heat clusters of where crimes are happening. It also has a similarities uh capability. So what it does is it scans, I can scan like so many copies of something right then and right there. And if it catches similarities, even if like air displacement, it will let us know. So we can start tracking these. It's kind of tracking our evidence for us. It's got an evidence bolt. So theoretically, the community will be able to go on our app and report a crime right then and there, and it goes to the right person at the right time, right then, right there.

SPEAKER_00 45:48

Wow. And this is okay. Um this that was this is crazy. I don't know anything about this MMIP project. What where does that where did that start?

SPEAKER_03 45:59

And so it's a long history. So there is a highway, and I can't remember what it's called, so because I'm not the one that does all that stuff, but it's I believe you say it's I-40, but it's a highway that runs up from Canada down to Mexico. And along this highway, there's women and children that have gone missing over decades, starting in like the 70s, and it's getting worse, getting more prevalent. And typically on average, they're between the ages of 18 and 18 and 20, and they're walking on the highway because there's no public transport system down there. And they're getting, I'm I'm assuming, probably traffic because it's the highway system, um, or they're alone at home. So, but they're typically around the ages of 18 to 20.

SPEAKER_00 46:42

That's crazy. So then this uh MMIP project is is the goal of that is to sort of investigate and figure out what's happening with these people.

SPEAKER_03 46:52

Yes, there's a huge movement going around. Have you ever seen pictures with women with a red handprint on their face?

SPEAKER_02 47:00

Uh I don't know.

SPEAKER_03 47:02

If you haven't, do your research. So yeah, just type in MMI, everybody that's listening to this MMIP project, Google it. It's it's a huge movement right now. There's uh like there's organizations that will help do uh therapy for families because what's happening is these families don't know what's happening. Like they'll put a report in, and weeks later they still don't know who's got the report. They can't figure out what's going on. And by this time, I mean, come on. Oh, yeah, there's nothing. So so what we want to solve is a, we want to be able to get the report out right then, right there, and use it as an amber alert system for the tribal nations.

SPEAKER_00 47:40

Yes, yeah, that's a great idea.

SPEAKER_03 47:42

Yes, it's very near and dear to my heart.

SPEAKER_00 47:44

I love, I love that you're helping with this. That's I am gonna look that up. And and I apologize to if I am way behind on I I just I've never heard of this project.

SPEAKER_03 47:55

But I don't think there's enough people being loud about it and like not our native daughters, very uh organization that you guys can go and support right now. They're amazing at what they do, they help families that go through this, go to they go to court within, they keep them updated. But there's only so many of them. So when I'm done with partner, we're implementing this. It's called the Red Voice Project.

SPEAKER_02 48:18

Okay.

SPEAKER_03 48:18

Yeah, so yeah, it's called the Red Voice Project, but it's being coded right now. So we're hoping to get that out in the next year to start helping these families.

SPEAKER_00 48:28

That's awesome. And I I I I really do like the the system that you just described, the sort of almost immediate amber alert type thing that you can build for this stuff. Because yeah, it's just it's crazy to think of I think you had mentioned before that within these tribes, the the setup almost feels like a different world, right? And and it's just right next door to people who probably have no idea that it's there. You know what I mean?

SPEAKER_03 48:55

Yeah, I mean, and it's it's not like cowboys and Indians, it's nothing like that. But I mean, in some of these areas, some of these parts of the reservation, I mean, yeah, it's not great. Some of them don't even have running water.

SPEAKER_00 49:07

Well, and it's not even like I mean, that's crazy to think about. And it's not even, I guess in my mind, I'm not picturing cowboys and Indians kind of thing. I it's more that if there's not a connection between the infrastructures and the cultures and all that stuff, then it might as well be another country, right?

SPEAKER_03 49:27

Exactly. No, it's you're exactly right. And the problem is, is you're you're you're you think of it this way, it's a third world country, right? So you're you're trying to navigate between a third world country, but 30 of them in an area that's a 400,000 square foot uh area, you know, and you nobody knows which ways up and which ways down. And then you've got the CIA on top of that, on top of local law enforcement. Who the heck is who? And what who's going where? And that's the problem, is there's no system to make sure that there's law and order there. Yeah, we're we're changing that. Um, if nobody's gonna do it by God, we will. And it's already patented. So there's two patents on both of them. So we're we're ready to rock.

SPEAKER_00 50:13

I love it. I love it. Well, uh, listen, Kelsey, I this is uh obviously this stuff is is outside of of research, but it's all related to people, and that's what that's what I think matters, right? Is that you're and I love what partner's doing in general, just with everything. But I I I really appreciate you educating everybody here and informing people. And I hope people do. I'll put all this stuff in the in the show notes of this episode when it comes out about all these different groups and the projects and the uh Red Voice Project, not our Native Daughters, all this stuff that you mentioned, so people can learn more. But I just I appreciate what you and your your company, your group is um working on.

SPEAKER_03 50:54

Yeah, thank you so much. I'm I'm really proud of my team. Everybody on my team has been carefully hand selected and proven to me that they care just as much as I do, and we only want passionate people around us because as you said, this is a huge feat. And but I've got the right people on our team to do it, and we're gonna get it done. That's awesome.

SPEAKER_00 51:17

That's awesome. Yeah, I can tell just talking to you. So that's uh this is exciting.

SPEAKER_03 51:22

Um Justin.

SPEAKER_00 51:24

Yeah, well, Kelsey, uh, again, I really appreciate you taking the time to talk to me. And you'll have to uh keep me posted on on things as they progress. But I'm excited to hear all the the upcoming news and everything else that you're doing. This is this is a very exciting time.

SPEAKER_03 51:39

Awesome. Thank you so much, Justin. I appreciate you.

SPEAKER_00 51:43

I hope you enjoyed that conversation with Kelsey. Her passion is contagious, and I hope everyone listening continues to learn more about this topic. Please check the show notes for links to learn

Michele Baptista

SPEAKER_00 51:54

more. My research patient guest this episode is one of UNIVO's very own, Michelle Baptista. Michelle is a friend and colleague, and I feel so fortunate to have the opportunity to work alongside her at Univo. Michelle shares her story from cancer diagnosis to remission. I love how open she is in sharing her journey, but it wasn't until after being in remission that she was contacted about a research study opportunity for cancer patients in recovery. Being an expert in the research field herself, Michelle comes to the research participant side with a very unique lens. She not only shares why she's a champion for research, she also gives some great advice for those looking for studies to participate in, and she highlights a need in the oncology research space, namely that once cancer patients are in recovery, the health system support and research opportunities seem to be almost non existent, which doesn't follow given the incredible toll cancer treatments take on your body that lasts for years. Throughout everything, Michelle is always positive and encouraging. I'm lucky to call her my friend, and I hope those that listen and don't know Michelle reach out to Connect as she invites everyone to in our conversation. So without further ado, please enjoy my discussion with Michelle. I am very excited to have Michelle Baptista on with me here. Michelle, thanks for hopping on the podcast.

SPEAKER_01 53:13

Thanks, Justin, for asking. I'm super excited.

SPEAKER_00 53:16

Yeah. So uh we are going to talk, Michelle, about your experience as a research participant, of course. And I want to hear all of your story and your experiences. But to start back, I know uh in the industry people know you in the research industry, but if you can kind of share a little bit about yourself, your story, and then we can kind of dive in from there.

SPEAKER_01 53:38

Yeah, great. Well, I have kind of an interesting story. I had a friend in high school whose mom ran an independent IRB called BiomedIRB. So my girlfriends all went off to college and I went to work for an IRB. And I worked at that IRB for almost 13 years before I left and started Aspire IRB. And at Aspire IRB, we were a women in minority-owned business that was eventually after 10 years acquired by WCG, which most people know today. Okay. And I stayed at WCG almost 10 years after acquisition and did business development for them. And yeah, so I think it was March of 2024. Um my life took an unexpected change when I got the confirmation after a mammogram that I indeed had breast cancer. And initially the diagnosis was stage zero DCIS, which stands for ductal carcinoma in situ. And so I I opted for a double mastectomy. And that was like my first uh step on my journey was to to to do that. Yeah. And then after my surgery, I got the the news that it had spread to my lymph nodes and so became invasive ductalcarcinova and stage two because it had spread to my lip lymph nodes, and then received the news that it was HER2 positive, which is, you know, the journey that I went on was treatment for HER2 positive breast cancer.

SPEAKER_00 55:11

Wow. Wow. So that was that was 2024, you said, right?

SPEAKER_01 55:15

Yeah, March of 2024. Uh my surgery was in May or June of 2024. And then almost immediately after surgery, I had to get a port and start 12 months of it's called TCHP, which is taxateer, carboplatin, herseptin, and progenita, 12 months of IV therapy every three weeks were a year. Oh my goodness. Yeah. So I went from stage zero baby cancer to um full-blown big girl cancer that required uh 12 months of treatment and had to take some time off work and yeah had to yeah, had to go through the whole ordeal.

SPEAKER_00 55:54

Um my goodness. That's crazy how fast all that happened.

SPEAKER_01 55:59

Yeah, all from a I had no symptoms, all from a routine mammogram.

SPEAKER_00 56:03

Oh my god.

SPEAKER_01 56:04

So late so ladies, get your mammograms.

SPEAKER_00 56:06

Amen. Absolutely. Yeah, thank you. Well, I get okay. So I'm sorry, before we I do want to jump ahead for folks, but I know we're gonna talk about I want to go back and kind of follow the story, but how are you today?

SPEAKER_01 56:19

I'm in remission. I um just completed the TCHP treatment last July. So I'm coming up on a year. Yeah, um, I do need to be on hormone blockers for five to ten years, which isn't great. So hopefully some new aromatase inhibitors will come out that have less side effects. But yeah, I'm I'm really lucky. Her two positive breast cancer 20 years ago was considered to be more one of the more aggressive breast cancers.

SPEAKER_02 56:47

Yeah.

SPEAKER_01 56:47

And one of my girlfriends in the industry said basically a death sentence. So I'm really grateful for clinical research and the drugs that at the time of my diagnosis were approved and ready for treatment. That that friend worked at a local biotech company in breast cancer, actually. So I sent all my records to her. I'm like, this all seems really drastic for just a couple months ago being diagnosed with stage zero. So she looked at all my records and had their chief scientific officer and chief medical officer look at my records and said, Yep, for HERTE-positive breast cancer, TCHP is what she needs to do. And there's there's nothing investigational out there for her. So but yeah, my first inclination because of what I do for a living was maybe I can be in a research study. You know, let's let's make lemonade out of lemons. That you know, I found out that what I what I had had already gone through trials and was approved.

SPEAKER_00 57:46

Yeah. Well, that I mean again, that's sort of the the outcome of research, right? Is yeah is what ended up, you know, you being involved in, which is uh great. I mean, I I love that you were sort of had the access that you did to to get some of these answers early on and get some feedback and stuff like that. But I also feel like, you know, this is sort of outside of the the research stuff, but just from everything you went through, again, we we've known each other for a while. And I remember talking to you, it was probably towards the tail end of that year when you were back getting back into stuff. You've just always been the I want to say happy, but like you've always been a very bright person. Like that attitude has to help, right?

SPEAKER_01 58:29

I would like to think it did. Yeah. I mean, you think why me and then for a minute, and then it's like, well, why not me? You know?

SPEAKER_00 58:36

Yes, yes. It's it's encouraging, I think, to watch people like you go through your journey and stuff. And I hope I know a lot of people in the industry, a lot of your friends have been close to you throughout this stuff, but it is it is encouraging to sort of watch you and you know, see you go through this journey. And I and I I do appreciate that you're very open about not just sharing your story, but like you work in this field and you have always looked for research as a as an option, like it is an option for people.

SPEAKER_01 59:07

Yes, absolutely. And um, yeah, I chose from the very beginning to be sort of public about it. And I was shocked at how many people silently messaged me and thanked me because they didn't feel they could talk about it openly.

SPEAKER_00 59:20

Really? Yeah.

SPEAKER_01 59:21

Yeah.

SPEAKER_00 59:21

Well, it's hard. I this is not, I mean, anytime you go through something this that big in life, right? Like this is a major thing. And to be that open and that vulnerable and that like you don't know what's gonna happen, right? Like you know, that the next day to day, like that's and again, just to stay so positive as you have throughout the time is is a testament to you know, testament to you in general, right? Like that's that's just awesome to see. Yeah.

SPEAKER_01 59:49

Awesome. Thank you.

SPEAKER_00 59:51

So how do you how do you go from that to uh I guess take us through you you've gone through the treatment stuff, you're you're in remission now, and and so how do you get to a research study?

SPEAKER_01 1:00:03

Yeah, so I um live in San Diego, California, and I went through treatment as part of Scripps Institute here in in Southern California. And in my my portal, I when I was signing in and going through organizing on my doctors and and whatnot, I somewhere in there saw a box that said, Are you interested in being contact about research studies? And I said, Heck yeah.

SPEAKER_00 1:00:29

Yeah, that's awesome. So that that was an option that you could actually like select. Okay, that's nice.

SPEAKER_01 1:00:35

Yeah, and like I said, I'd been asking also when I finished TCHP and went to the the the next phase, which is aromatase inhibitors. My doctors like the ones out there are well researched, and you know, I don't there isn't anything really investigational out there that I would recommend you trying at this stage. So I was kind of bummed at that because I thought if I'm gonna be in a on a drug for five to ten years, I would love to be contributing to research at the same time. But there that then again, there was no option.

SPEAKER_00 1:01:04

So sure, sure. Well, but and and you know, again, not for lack of trying. I mean, I think a lot of times there there's the opposite side of that, obviously, which is there is something out there available for research and you just don't know where to find it necessarily. So that's that's also uh unfortunate. So, okay, so you you you're at scripts and you and you check that box. What happens after that?

SPEAKER_01 1:01:22

Yeah, I think it was around January or February of this year. I got an email asking if I was interested in participating in a study called the Amwell study. Okay.

SPEAKER_00 1:01:33

And what is this, what is this study exactly? How what were the steps taken in terms of you got sounds like you got a message from Script saying, are you interested?

SPEAKER_01 1:01:42

And so I uh had an initial phone call, I guess, to go over inclusion exclusion criteria.

SPEAKER_02 1:01:48

Yeah.

SPEAKER_01 1:01:48

And I met those requirements. It's uh a wellness program. So it there was no drug involved. But as you can imagine, going through something traumatic like cancer, I was at a stage also where I was feeling very tired and broken and exhausted from all the treatments that I had been on. A lot of the hormone blockers cause weight gain. So I had gained weight and lacked the energy to do normal day-to-day activities. And when you finish treatment, it's like they've they just sent you off into the wild and say, here you go. So it came at a really good time to get this email because I thought, yes, I need I need something to motivate me to start exercising again. And so I went and signed consent. They sent it to me, electronic consent. So I signed my first electronic consent, which is exciting.

SPEAKER_00 1:02:39

Um I'm sorry, just to hit on the electronic consent process, right? So again, like you know, back in the day, every everybody was, you know, you had to be in person and you'd have this consent document that was so long, and the PI would sit and go through that with you. How did the electronic consent work for you? Did they literally just email it to you and say, hey, read this in your spare time and sign it?

SPEAKER_01 1:03:02

Yeah, they did, and they were very good about if you have any questions, please let us know. I let them know I worked worked at an uh independent IRB and they thought that was very cool right from the beginning. And and but were yeah, very uh available to answer questions. One of my concerns was I am in business development and yeah, I try I travel. So I my first concern was can I miss any of my scheduled appointments and maintain in the study? And she said yes, that they allowed up to four oh good question missed study visits. So okay, yeah, I didn't want to be the the protocol uh deviation or right, you know what that means, right? Yeah, yeah, yeah. So I wanted to make sure I could, you know, fulfill uh my obligations as a research study participant.

SPEAKER_00 1:03:45

So I love that. That's awesome. Yeah. Okay, so you sign the consent, you're in. What is the next step that you go through?

SPEAKER_01 1:03:51

Yeah. So I I went for my initial assessment where they did your demographics and your height and weight and group led. And yeah, and then scheduled me for my first group in-person meeting. So that was cool too, because the first eight weeks of the of the study were group discussions and written activities. So there was me and three other women in my in my group. We met for the first eight weeks every Wednesday night, and we talked about overcoming barriers of self-confidence and reasons that maybe uh we're being prohibited from exercising and sort of taught us tools to help increase activity and motivation and in our lives. So it felt very much like therapy, which I really needed at that stage.

SPEAKER_00 1:04:38

That's awesome. So that and that's how the study is designed, you're saying like you go in and you have these group discussions. What was that is there like a moderator from the study team that's like the PI was there, okay?

SPEAKER_01 1:04:49

Anne Cool, Dr. Ann Cool, and a study coordinator. And they were, you know, they we got a Fitbit, so I got my first Fitbit and kind of showed us how to use it. And it was on the hospital grounds of Scripps Memorial in La Jolla, and so they paid for a parking and which was all very nice, and I appreciate it. And yeah, so that was my meeting place was at the hospital, 6 30 p.m. every Wednesday for the first eight weeks.

SPEAKER_00 1:05:19

Oh wow, okay, okay, and so you I mean, over eight an eight-week period is a decent amount of time, like you, you know, make friends in that, you know what I mean? Like, did you get how was the experience with not just the cornea's, but it sounds like you got pretty close to the other participants too?

SPEAKER_01 1:05:35

Yes, it was kind of unique because I hadn't really ever heard about on from my IRB days any any study that was similar to this.

SPEAKER_02 1:05:42

Yeah.

SPEAKER_01 1:05:42

But yeah, I got really close to the other participants, and I was actually the most recently completed from chemo and immunotherapy. So I just felt like I was I should be better off than I was physically after treatment. And they were able to assure me that I was still early. in in completion and that I needed to give myself time. And so the camaraderie from the from the other women in the in the group was really helpful to me. That's also yeah reassuring.

SPEAKER_00 1:06:13

Yeah no that is nice especially like you said if everybody else there has it is further along past their like you know procedures and all that kind of stuff. Like so you you actually had the sort of wisdom of of people who have gone through where you're at now already to say like no it's okay you're you're fine where you are and yeah that would be super helpful. So then what about the um the study team itself? Like what about the research coordinator or the PI? Was it the same people every time you met?

SPEAKER_01 1:06:41

Well for the first eight weeks it was Dr. Kuo and I hope I'm saying her name right Kuo Kuo we called her Ann. She was amazing. And and then the second uh eight weeks we had a different person because the second eight weeks were actually teaching us how to use weights and do like some cardio aerobic exercises different things that we could do in our own homes that would help us learn how to do exercises on our own so to speak.

SPEAKER_00 1:07:06

So sure so for the first eight weeks it was that team so what what happened after the eight those first eight weeks?

SPEAKER_01 1:07:13

Uh another another person came in and helped us with our exercise activities. So oh okay okay it was just it it was just a different individual so I was kind of sad to let um Dr. Ann go but we got attached to our next person that that helped us learn actual exercises and we worked with the bands and lightweights and kind of taught us how to do chair exercises and aerobics and nice we did dance moves you know we we there was some music and some dancing involved but yeah it was really cool.

SPEAKER_00 1:07:47

That is cool. So you said the first eight weeks were uh Wednesday nights 6 30 every week after that for the exercise stuff this like second part of it was we got a we got a yeah we got a one week break and then the second eight weeks was the same 6 30 p.m for an hour we met and we exercised that's so cool so and I just completed that last Wednesday night so oh nice yeah we were kind of sad.

SPEAKER_01 1:08:11

Oh so is there a third is it is a no that's the end of the study yeah we'll have a six month assessment and blood draw and then a 12 month assessment and blood draw so nice oh gosh yeah well I mean is there I'm sure their contact will still be there between you and the participants. That's a long time that was kind of yeah that was kind of interesting during the two eight week modules they asked us to not exchange phone numbers because they didn't want anybody making friends outside of the rooms until we were done with the second eight week mod of module. So at at the end of last Wednesday we were able to exchange phone numbers and you know find each other on social media.

SPEAKER_00 1:08:52

Yeah okay so so help me understand what was the rationale for not wanting you guys to connect outside.

SPEAKER_01 1:08:59

I think they didn't want people to develop clicks and anybody to feel left out.

SPEAKER_00 1:09:04

Yeah okay that that actually makes sense I mean it's it's I guess with that again for from both of us are in the industry but for people listening about research studies and understanding just again that this this design of a study is completely different than a a drug trial obviously clinical trial. But to to think through the the amount of thought and intentionality behind a protocol design of any kind of study to the extent that like you said it was part of the design of this study that they didn't want participants to necessarily communicate outside of the study even though they again like that's foresight that's like hey these people come in every week in the same group they're going to naturally build a connection with each other but in terms of protecting the data they didn't necessarily want clicks to start like you said and an outside activity to influence the study data right?

SPEAKER_01 1:10:00

Yeah it was very social behavioral type yes yes which is something we do very little of in the independent IRB world. Right more academic and hospital based research I think for sure which this was so um the other thing I wanted to tell you about that was super cool is that after one of my first visits I stayed after um mentioned to Dr. Dan that I wasn't you know I worked for an IRB and had my you know for 35 years and I and asked her I said I was curious about how she got funding for this research. And so that was a really cool story. She told me that the funding came from a lawsuit the Kruger versus Wyatt lawsuit which was a $20 million class action settlement approved in 2020 and the lawsuit alleged that Wyatt misled California consumers about the risks and benefits of its hormone replacement therapy drugs including Primrin, PremPro, and Premphase. And after attorneys fees, administration costs, and the class action member payments, the court directed those residual funds to six California medical research institutions to support research and treatment programs focused on breast cancer, women's cardiovascular disease, Alzheimer's disease and dementia. So scripts here use that that opportunity to create this AMW program.

SPEAKER_00 1:11:25

That's amazing actually I I don't think I've ever heard of that before.

SPEAKER_01 1:11:29

I've never heard of it either that was not a a traditional industry sponsored research study either. It was actually funds that came from a class action lawsuit which I found incredibly interesting.

SPEAKER_00 1:11:41

That is interesting. Gosh I wonder how many other you know opportunities there are for whether it's through class action or otherwise like to direct funds for certain things. You know what I mean? Like that that's very interesting. So so was that was any I mean I know you said you stayed after and asked the the PI about that but like was any of that I guess it wouldn't have been disclosed in the consent process or anything like that.

SPEAKER_01 1:12:06

It's not like a it's actually I did go back and look and it did say that the find it oh the study is funded by the Kruger versus Wyatt Settlement Award was in my consent.

SPEAKER_00 1:12:17

Oh my goodness that's interesting. Yeah wow that is that is uh actually pretty fascinating in terms of like yeah and like I said it was just uh 2020 so you know maybe that we'll see more of that in the future so absolutely well and again I mean it sounds like there was there was enough left over to run multiple studies that went to multiple institutions like you said in California.

SPEAKER_01 1:12:38

So you know I think she said like seven there were seven institutions that were recipient recipients of the funding.

SPEAKER_00 1:12:45

Gosh it's a big lawsuit yeah it's but I mean again it's like you you making lemonade lemons right like you yeah a bad situation negative situation and somebody figured out or had the idea like let's let's get some good that comes out of this you know what I mean yeah and at the end of the day that's that's what you know I think our industry strives for the majority of us strive for right is to bring more treatment options to study participants so that is the point that is the point. So tell me I guess since we're kind of talking about it in these high level terms can you kind of put into words I guess for for folks listening like why other than you working in the industry and and being in it so so early in your career what makes you so interested in research like what what drives you to say like no I've I've always kind of looked for research and in any any way that makes sense for me like what where does that come from yeah like I mentioned I started working at an IRV right out of high school and it was always very administrative like right like the paperwork and the protocols and the consent forms.

SPEAKER_01 1:13:54

So I remember early in my career seeking out a research study for healthy subjects or you know something I could qualify for. And I'm I participated in a a research study of it was kind of like a PeptoBism type product for healthy subjects.

SPEAKER_02 1:14:11

Yeah.

SPEAKER_01 1:14:11

But yeah and then after that it was just I felt that experience was much different than this experience. I felt like the informed consent also it was probably back in the 90s. So I felt like the consent process was very rushed and the the research site was very busy and it was very much not the same experience that I had on this study. But anyway it was fascinating nonetheless. And after that when I became you know in a role of of of authority at Biomed IRB I would offer I would offer it to to to employees that if you want to participate in a research study you could have paid time off similar to like if you wanted to go volunteer for a charity event or something else.

SPEAKER_00 1:14:52

Oh yeah. So oh that's awesome you you made that policy at your company you're saying yes that's really cool I like that yeah yeah I like that and it yeah I mean get again it's like be even if you're in the in the industry being in a research study the there are a lot of barriers right to entry in that stuff and it is it is not it's not a small task right no matter what the study is I mean you committing for 16 weeks or whatever it is every Wednesday night for 16 that's a lot of com time commitment right yeah I'm still really fatigued in the in the evening so 6 30 p.m was tough oh yes right that's it again it's it's a lot it's a lot to sort of it's a lot that we ask of research participants yeah so it's I wanna I want to believe that we also do a good job of explaining the the virtuous side of it right and like you said why we're all doing this but it's still at the end of the day you have to convince people like this is worth the effort. Yeah yeah it it was it was definitely for me worth the effort I learned more about my job and have a whole new appreciation for what I do but I also was well taken care of by the folks at Scripps like I said they they took their time with us they were very kind and compassionate and answered questions and paid for our parking and gave us you know compensation for our time and travel and all the things so yeah that's awesome yeah that is really cool so so this wellness study that you're that you just you know completed the the second part of did it just involve this sort of wellness and exercise and that kind of stuff was were there any other components to the study besides the the sort of exercise piece yeah just the initial like blood draw and right demographics and height weight all those things and then now at the end of the second eight week module we'll I have an appointment Friday to do my second blood draw and height weight demographics and then we'll do it again in six months and then at the 12 year point. Okay.

SPEAKER_01 1:16:58

And then from the the blood draws yeah uh they're they're they're doing this biorepository study.

SPEAKER_00 1:17:05

Oh okay so there's a biorepository like piece of this component yeah thank you of this same study. Yeah. So what's the did they tell you like what's the purpose of collecting or or creating a biorepository for this?

SPEAKER_01 1:17:21

To provide a central collection bank to store tissue blood and other body fluid specimens collected from patients with cancer and other diseases.

SPEAKER_00 1:17:29

Okay. So it's just a general way I mean they got you there anyway um they're they're only enrolling cancer patients for the sort of wellness piece and so yeah you know and then might as well yeah and then the second goal is to release specimens from the bank to researchers to study relevant cellular molecular and genetic properties of cancers and other diseases so gotcha so that's one of those undisclosed future research purposes. Yes well actually that's a very interesting topic I think just because I don't know if you know again you you've been in this industry yourself but for people who haven't do do you how was it explained to you like taking off your IRB hat and just thinking of your patient experience when you because I assume you signed a separate consent form for the biorepository piece, right? So how was that future research stuff explained to you?

SPEAKER_01 1:18:21

Mostly just via the consent form there wasn't a whole lot of pre-discussion about that but the consent form like looking back was pretty thorough and referenced all the things that we require and you know it it did address how long and and that I could I could stop participating at any time if I so choose.

SPEAKER_00 1:18:39

So it so it I mean the consent form basically went through all the details of like you know you had to basically consent that you're okay with them taking your blood and the fact that they're just they don't necessarily know the uses of this in the future they're you know a researcher could use your blood in the future for whatever they design or think of. Exactly yes yes but I think that's really important because I think that the idea that research has to be forward thinking but a lot of times in where we're at right now with things moving so fast and medicine needing to move so fast, these biorepositories are more important than ever because you don't always have the time or the the money to go back and say hey now I have an idea for a research study where I would need to test a bunch of cancer patients' blood instead of having to enroll thousands of patients or whatever to draw their blood then you have these biorepositories where you say hey let's again think in the future we have people coming in for these studies we'll just collect their blood keep them and down the road if we think of a good protocol to study their kind of blood then then we already have access to it.

SPEAKER_01 1:19:52

Yeah and just like I was diagnosed back in March of 2024 and like I mentioned when we started the the interview there was already treatments approved for my type of cancer. So I benefited from all the previous research that was done. Absolutely and I'm super grateful for that. So as a result like yes I would want to do anything I could to help anybody else in the future that could benefit from my discarded tissue sample or blunt samples drawn from any kind of research study.

SPEAKER_00 1:20:24

I love it.

SPEAKER_01 1:20:24

I love it pay pay it forward.

SPEAKER_00 1:20:26

Pay it forward yeah no that's a that's a great way to think of it actually I I like that so let me ask you this in in your study where you got pretty close you said with the other people in your study with you. Did you I don't know if it came up or not but do you know if any of those other people work in the research industry themselves or were you the only one in the group that I was the only one.

SPEAKER_01 1:20:45

Yeah okay I mean IRB work is so niche you know there was a there was a dentist and there was a retired woman and then there was a uh a woman who was a stay-at-home mom.

SPEAKER_00 1:20:57

Yeah so then thinking about your experience I mean did did anybody well I guess one once they found out that you worked in this space did did these people come to you and ask you questions like hey you you got you got inside baseball knowledge here can you kind of answer this right?

SPEAKER_01 1:21:13

I don't no not really because I think like I said Dr.

SPEAKER_00 1:21:16

Ian and and Maria did such a great job of explaining everything and um yeah that makes sense that makes sense and did you get the sense that like again I know it's hard to separate you being a research participant from your actual like life experience of working in the industry for so long but yeah was there anything that you came across in your experience in the study where you were like either this is helpful to see and then it validated what you hoped research being a participant would be or like you know what I see this and and through no fault of you know no pointing fingers but like this is going to inform how I suggest things move forward in the future kind of thing. Does that make sense?

SPEAKER_01 1:21:57

Yeah yeah I mean I guess I could I guess I think of the fact that you know I got I got to receive counseling that I probably would have normally not sought out because I got to participate in this research study. You know, it's like I think a couple times during my treatment I I mentioned to my oncologist like this is very traumatic. I think maybe I need counseling and she would give me names and then I would never set up the appointment right sure. So as as a result of this research study, I thought I was signing up for you know to talk about exercise and motivation and I didn't anticipate the level of compassion and love and tolerance from the other patients and from Dr. Ann about challenges that that cancer patients face once they get through treatment. So I say this all the time that I wish that more people in our industry focused on the side effects that are a result of chemo and radiation and immunotherapy than just curing the the disease, right? I don't think there's enough focus on the side effects that we all deal with after going through these treatments.

SPEAKER_00 1:23:02

So yeah that that's a that's a really valid point because you're right the the the focus obviously from the research side is is to find you know better ways to do the treatments or you know that kind of stuff. But like you said that the stuff is so traumatic on anybody that goes through it. And and I imagine that the the the side effects and and the residual effects after the fact are probably different for everybody. So like how much do we really know about that stuff? Like it seems to be very individualized. I'm sure I'm sure there's scales but like your experience is probably pretty unique in terms of how you're feeling afterwards and what you're still going through.

SPEAKER_01 1:23:45

Yeah and um just yesterday I went to a follow-up appointment with a uh urologist because of some of the symptoms that have lingered on after finishing treatment and she was able to determine that one of the reasons I was having such bad side effects on my digestive tract system was due to endometriosis that I had that was before I even entered you know into cancer treatment. So that was kind of reassuring because it's like why am I having these symptoms that nobody else seems to have like my exact you know like I tried to get into a specialist in last year and it took six months to just get in there. So I think that often research studies can give us opportunities to get answers quicker or resources available that aren't available from standard of care.

SPEAKER_00 1:24:41

That's actually a really good point especially with gosh if you if anybody listening has tried to set up you know as a new patient for for especially a specialist or you know what I mean for a doctor like I'm pretty sure it's like nationwide it's very difficult and it takes a long time to get established as a new patient with a doctor these days.

SPEAKER_01 1:25:00

So and what and when I had cancer it was quick quick quick right everybody will meet with you quick and they'll get you on chemo and they'll get you on immunotherapy but once you're done and you're in remission it's kind of like not as urgent in their mind that you have these lingering side effects that were caused from the treatments. So oh that's interesting. And then the general you know like family and friends they're like are you good? You're good, right? Yay yes technically I'm cancer free but I still can't stay up past 6 30 p.m we don't have the energy that I used to and hot flashes like crazy aches and pains and all the things you know and like you said I do try to be a positive person so I don't want to walk around complaining but no but this is your life. Yeah you finish treatment and and then you're expected to go on and there's there's not a lot left. So this was so important uh and timely that I I got this information about this research study because I really really needed it and I really needed the the things that were provided as a result of uh getting to participate in this research study. Like I needed to talk to other women and I needed to talk about tools that can motivate me to exercise when I don't want to exercise and I don't feel like I could even sit upright on the couch.

SPEAKER_00 1:26:14

Yeah that's I mean I love that. I I again it's like you you hear of social behavior I know you mentioned like this sort of a social behavioral study and that you know a lot of times there's sort of this hierarchy within research itself right of of the sort of important studies and the stuff that's maybe not as but to your point you can't put a you can't put a price tag or a value on everything that you just got from this social behavioral study, right? Like it sounds like this is this is just as important and life giving and changing as a drug study could be because this is stuff that you needed at this point. Yeah that's awesome that's awesome well and again I I appreciate you being honest about this. I think people listening if you if they've gone through anything similar to this like again to your point you you really you truly are one of the most optimistic people I've ever met and and still you're you're just able to have these honest conversations like this is just what life is like like I don't I don't think people should shy away or and this is why I really like doing this podcast and talking to people like you going through these experiences because I think it's important that everybody understands things aren't always great. They're not always you know what I mean it's not always easy it's not always perfect and and there's a lot of stuff here it sounds like in your experience that worked that worked really well right you had a good experience you had a good PI a good study team the other participants were good like you didn't have necessarily issues in the study but even that is like that's uh that's important to share yeah but I think to your point high being able to s have that experience and highlight this isn't offered enough like are there Are enough of these opportunities out there? And I I do want to ask you too, just to sort of like, you know, as we I guess to close, you've been in the industry. I I think you know, you have access and you have you know how to find, I guess, research studies, and and you were part of script, so you you know you had that option, though it's nice that script has that built in. If somebody's listening and they're like, okay, this is great, how in the world do I, I don't work in the the space, how do I find out about research studies? Like what kind of advice do you have for people in that realm? Because I know we talked before and you you have a lot of avenues that you look at, right?

SPEAKER_01 1:28:40

Yeah, I mean, I think like I mentioned earlier in the interview, like check that box that says yes, I'm interested. It doesn't commit you to anything other than receiving the information. So I think we all need to start by saying yes, yes to research and just to be open to receiving the information from our primary care physicians or whatever health system we're a part of.

SPEAKER_00 1:29:00

Yeah, no, that's really good. I guess in terms of resources, are are there any other resources that you're aware of where somebody looking for research outside? I mean, maybe they're in a health system that's super small or doesn't even offer, you know, obviously there's a lot of people who go to their doctor or hospital and they don't even offer research there. So there's no box to check. Like what are yeah, where would you find out about this stuff?

SPEAKER_01 1:29:22

I mean, I think we have a lot of information due to the internet and AI and and you know, I'm more and more using uh chat GPT and but also I go to trade shows. I remember the first trade show after I came back. I went to every patient advocacy group or patient recruitment and entered my information so that I could be contacted as far as a research study. So oh, that's a good one. Yeah, I think you could do in a search engine how do I how do I become part of a research study? And and hopefully some of those links and resources would become available to you to uh at least enter your information to be contacted if there's an opportunity if there's an opportunity. So yeah, I'm in all those now. I get I get texts. There's a shout out to uh Velocity Clinical Research. They have a uh a local site here in San Diego that does quite a bit of clinical research. So I went on went on their platform and filled out my information and my husband did the same. Um so I think it just takes making that initiative to making yourself open to it and available and to you know read the information and resources that that come across. And you never know what opportunities may come to you by doing so. Look at like even my longevity in the industry, I never would have anticipated participating in a trial like the AMW program.

SPEAKER_00 1:30:48

So yeah, no, that's actually really good advice. There's a little bit of intentionality behind here, right? Like you the these things aren't necessarily going to come knocking on your door without you putting a little bit of effort in. But like you said, with now with with all the resources we have online and at our fingertips, it it does seem like it is easier now, right, than it was 10 years ago to to find these kind of places. And I really like the patient advocate angle for people listening, just to sort of seek out those if you're if you're like looking at a certain condition or something. And that's a great place to start to to at least say yes, I'm open to the opportunity, like you said.

SPEAKER_01 1:31:27

Mm-hmm. Yeah. Where do I start?

SPEAKER_00 1:31:29

Yep. I like that. I like that.

SPEAKER_01 1:31:33

Hook me up.

SPEAKER_00 1:31:34

Hook me up, I like it. I like it. Well, Michelle, I can't thank you enough for your time and and uh sharing your story and again being being willing to share your story, be vulnerable, and and I guess just being willing to be so real with with me and and everybody listening. Like this is just really nice to hear somebody who has gone through the crazy stuff you've gone through. And I'm so happy that you're you're in remission and you're doing better now from that standpoint. But it sounds like there's still still a lot of uphill to go through. But anyway, thank you for uh for doing this, being on the podcast.

SPEAKER_01 1:32:12

Yeah, it's been very therapeutic to share my story. And yeah, it I love paying it forward in anything in life. So anybody listening that that wants to connect with me and and I'm always happy to be a resource too.

SPEAKER_00 1:32:26

Oh, that's awesome. That's awesome. I will put uh, you know, when this comes out, people have access to you. I mean, they you know everyone I feel like knows Michelle already, but uh, if you haven't met Michelle, you should reach out and uh yeah, great talking to you.

SPEAKER_01 1:32:41

Thank you, Justin.

SPEAKER_00 1:32:43

Thank you so much for listening. I hope you got something valuable out of these conversations. If you enjoyed the show, please be sure to follow, subscribe, or leave a review on your favorite podcast platform. For more information about our guests today, please check the show notes. I encourage everyone to check out our website at univoop.com to learn more about how we are living into our mission of connecting more patients with research. Thanks again.