Follow The Brand Podcast with Host Grant McGaugh

Coded Inequity: How Healthcare Algorithms Leave Lives Behind

• Grant McGaugh CEO 5 STAR BDM • Season 5 • Episode 32

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Dive into an essential conversation about health equity and the representation of marginalized communities in clinical research. In this episode, we welcome Dr. Tania and Damon House, who share their expertise on integrating underrepresented voices into the healthcare conversation. They discuss how precision medicine is a transformative solution for achieving health equity, ensuring that treatments are tailored to diverse populations.

As we explore significant health disparities and the implications of excluding certain groups from clinical trials, listeners will gain insight into their role in promoting equitable healthcare practices. The guests emphasize the importance of community participation in clinical trials and healthcare providers' responsibilities in bridging these gaps. 

Amidst ongoing discussions about systemic biases in healthcare, the episode encourages listeners to challenge traditional norms and engage actively in their health journey. They discuss the Gwen Lily Research Foundation's mission in facilitating outreach and education within the community, positioning health equity as a shared responsibility. 

Join us to learn why understanding your health and getting involved in research matters for everyone and how organizations are working diligently to create pathways for health equity. This episode inspires listeners to take action, advocate for their health, and contribute to creating a more inclusive healthcare landscape. Don’t forget to subscribe, share, and leave a review!

Thanks for tuning in to this episode of Follow The Brand! We hope you enjoyed learning about the latest marketing trends and strategies in Personal Branding, Business and Career Development, Financial Empowerment, Technology Innovation, and Executive Presence. To keep up with the latest insights and updates from us, be sure to follow us at 5starbdm.com. See you next time on Follow The Brand!

Speaker 1:

Welcome everyone to the Follow Brand Podcast. I am your host, grant McGaugh, and I get the chance to bring back two of my favorite guests. I cannot believe it, as we get close to the 200th show on Follow the Brand. I couldn't think of a better way to really get to this milestone without. We've got Dr Tanya, we've got Damon House here and we're going to have a real discussion. It's not just about technology.

Speaker 1:

Last time we were here, we were talking about cybersecurity. We were talking about things that are going on in the emerging technology space. With Damon House, today, we're going to talk about some things that are very, very important for a lot of people and especially underrepresented communities that we all represent. We're talking about awareness to action, advancing health equity and precision medicine today, and we're going to talk about some how do we take action around some things that are very, very important. So we're talking health equity, precision medicine and the urgent need for action. So I want to introduce you now. First we'll go to Dr Tanya and then, right after she finishes up, let's go over to David Howes, get us introduced and let's talk about this important subject.

Speaker 2:

Okay, well, I will not get on a soapbox so early. My name is Dr Tanya Marie Martine Mercado, dr Tanya for short. I am the CEO of Phrenetic. Phrenetic is a biomedical research organization that is dedicated to bringing precision medicine to research and healthcare. The reason why this is important is the life cycle of how you get your over-the-counter medication has an entire back office cycle, starting with research and ending with patients. We, as patients, get those drugs after research has occurred, it's been released into the commercial space and then approved by your doctor, by the FDA, and then prescribed by your physician. So that's the life cycle of medication, of treatment, of care Starts with research, ends with healthcare execution. And what we're going to address today is how Black Brown, other underrepresented communities are not involved in that cycle and are being woefully left out on a consistent basis, meaning that treatments, medication and so on and so forth is not tailored to us.

Speaker 1:

Interesting.

Speaker 3:

All right, damon, let's hear from you Not much left to be said but hello, my name is Damon House. I have the joy of working with this woman every single day to hear this brilliance and much, much more. But yes, as she's talking about it, when we talk about the efficacy of how drugs are developed, when you go to a store and you say I'd like Tylenol or I'd like a prescription from your CVS, your doctor has written you a prescription that's tested for the everyone, not you as the only one, and so one of the things that we want to do is we want to definitely take a look and peel that back to understand what those differences look like. Were those medicines, those drugs, were those treatments tested on people like you? Were they tested in your age range, your gender range?

Speaker 3:

Oftentimes, women don't get as much love in the clinical trials as men do. We can talk about things like BMI and the stigmas that are associated with models that have been developed around Eurocentric males, but that has followed us down into some of the processes and procedures in healthcare electronic health records, prescriptions, treatment plans, even things that they do in critical emergency situations and so we want to have this conversation to talk about the disparities in marginalized communities, under unserved, underrepresented communities that don't actively participate in the health care system, and when we don't participate, it's harder for the system to support us because we're not part of those clinical trials. Yes, soapbox, I have many too. So let's go ahead and dive in, and I'm sure Dr Tanya and I might pull out one or two, might get up on it and we might give our own sermon today.

Speaker 1:

Well, this is important. We've got to have these kind of discussions because they're not readily had and we need to inform the public. This is why we have an open mic, an open forum. Now you both are part of what we know as GLRF, which is the Gwen Lilly Research Foundation, which you started with the frenetic. And then you know, damon, you're the chief growth officer there. But you both are going to be at the upcoming conference for the ACRP, now that's the Association of Clinical Research Professionals. Talk to us about, first of all, why you started this organization and what is your intent at the ACRP.

Speaker 2:

I'll go ahead and take that one. So I started Gwendoly Research Foundation, which is named after my mother and her favorite flower. I started that organization as a non-profit to really focus where our for-profit could not. So Gwendoly Research Foundation is the nonprofit, philanthropic arm of Phrenetic and it goes deeper into the community to provide that education and that outreach really focused on the nuts and the bolts. When we say translating research into care, that's actually going out into the community and talking about research, making it a little less scary, bringing that information and having conversations that you may not be having with your physician in a very practical way. So, as Phrenetic is focused on the science, the genetics and the genomics and really getting deep into the research and provider side of it, the William Lee Research Foundation is taking that, breaking it down into actionable chunks. We're not just providing information. The goal is to give action around that. Ok, so now you know this, what are we going to do about it? What can you do in your community? What can you do in your family? What can you do as an individual?

Speaker 2:

Right, the Association of Clinical Research Profession Professional is the premier research conference and, as the executive director and president of the Gwendoly Research Foundation. Where Frenetic goes, gwendoly goes, and Damon is one of our board members at the Gwendoly Research Foundation, so he's Frenetic's chief growth officer when he goes, gwendoly Research Foundation, so he's Frenetic's chief growth officer when he goes, gwendoly Research Foundation goes. And it gives us this wonderful opportunity to bring what Frenetic is doing and breaking it down into the community right. So this conference this year for ACRP is being held in New Orleans, which is where I was born and where I'm from, so there's a lot of personal attachment to the location. But it also gives us a very unique opportunity to leverage my friends, my family and make them more aware Our research, I'm sorry, our academic institutions that we're partnering with, like Xavier and Southern. There we can give them some visibility into the research and the health care by actually being out in the community, which is the point. It's enough to.

Speaker 2:

We're trying to move away from research constantly being in these circles and silos that the average person, just the average individual, isn't aware of. We're trying to make it more normal, making that accountability a normal part of your everyday, and the ACRP conference in New Orleans gives us just a unique opportunity to do that, not only because Frenetic is speaking as an organization. We have a booth, we have a presence there as an organization. I'm speaking, damon is speaking on a larger stage with Dr Claude Lewis-Charles from Microsoft. They're sharing a tech expo stage and we have a lot of activities planned just in and around the community. We're making sure we're having dinners that are at restaurants owned by community individuals, we're taking ourselves out and we're talking to members of the community and, even more fun, this is being held during Jazz Fest, so it gives us a big opportunity to you know, really be authentic in a fun way and again take some of the stigma, the scariness away from research and really give people a practical understanding of what it is.

Speaker 1:

David.

Speaker 2:

I'd love to hear your perspective on it because, like I said, I don't want to talk all day, but go ahead.

Speaker 3:

Well, Jazz Fest. I promise we won't do any singing. I promise we, we, when we get down there and I have to say Dylan and Grambling, because if I don't, then they're going to get sore.

Speaker 3:

I don't need the hate mail. We want to touch on minority serving institutions and I'm sure we'll get into that in this conversation. But, getting down, there is an opportunity for us to see our peers in research. I guarantee there will be very few other organizations that look like us, that have the message, the passion, the mission, the vision, the goals like us and we did.

Speaker 3:

She and I did a little bit of research in trying to find organizations that have labs that do the type of work that we do, and out of the 200 and almost 50 in the country, when you get a woman-owned, minority-owned, veteran-owned firm that's doing this work, that number gets really small, really quickly. So this is an opportunity for us to get into these types of spaces and assert our voice and make sure that we're not belligerent, we're not angry, but we are assertive in the needs for democracy, for the democratization of clinical trials, we are assertive in the need for addressing the disparities in communities around health outcomes and we are assertive in saying that we'd love to partner with other organizations that want to work together with us, but we need to make sure that we're all moving in the same direction Now we've got some input from both of you, and I always like to jump right in and talk to the elephant in the room and for me, to the elephant in the room, and for me, the elephant in the room is around.

Speaker 1:

It's an area of health equity. But what happens when you, a population of people, are not in the room for research and then, like right now, we have a measles outbreak that we haven't had in 25 years? What happens when a whole group of people, when they come out with different medicines and vaccines, are not accounted for? I want to bring this over to Dr Tanya. What are the implications of that?

Speaker 2:

You have a lot of implicit bias buried deep into code, and what I mean by that is when we look at some of the tools and most people have been a patient. You have seen a doctor at some point in your life, even just to go to school in the US, so on and so forth. These days, very rarely are you seeing doctors and nurses write things down. It's a lot of computer-based interaction and there's a lot of automation. There's a lot of tools in place, not only to help create measurements and diagnosis and dosages of medication, but even just simple things like, for example, the pulse socks, the little thing on your finger that didn't accurately measure melanated skin. That's a very real, very recent example of what that means not being in the room.

Speaker 2:

Again, we need to be realistic and remember when some of these things were created, particularly tools and resources like a pulse ox or other types of technology it was based on Eurocentric, male, eurocentric individuals, right, right. So now you fast forward a little bit and you start automating that information. The data hasn't really been improved in that. You can see that you know just research any clinical trial and clinical trials dot gov and look at their diversity, breakout, which is required to be reported. So you can fact check, please do. Actually, you can fact check this information, and so when you are not included, in the design phase of some of this.

Speaker 2:

So think of research, like you're designing a drug, you're designing a treatment, you're designing a novel therapeutic. If you are not included in the room, if you're not included in that data set, then it's not for you. It's just that simple. How can you be included? And so take the emotion out of it and just look at it as ones and zeros. Be included, and so take the emotion out of it and just look at it as ones and zeros. Your ones and zeros weren't in that data set because you literally were not there. You were not represented.

Speaker 2:

So now fast forward and you have things like the pulse ox is just like I said, that's so recent realizing that melanated people. It doesn't capture it the same way. And what are they doing? They're trying to create a new one, but they had to get to the place where we didn't know that was inaccurate, right? And think of how many other tools. Think of EGFR, the kidney measuring. Think of vaginal birth after cesarean, black and brown people, the measurements. The mathematical calculation for black and brown people adds more data than necessary to make it inequitable, based on stigma. That has long been since disproven Right.

Speaker 2:

And so when you start thinking about these things and you start applying it to again, the everyday person's health care. When you go to the doctor and that doctor or that nurse that is seeing you is looking on their computer, they're not personalizing that interaction to the point. Well, I don't like you because of your skin colors. I'm going to do something nefarious. No, this is code you know.

Speaker 2:

And also get over yourself. I'm going to be real honest about that. This is code. And take some accountability and think about the fact that you need to be involved in some of these conversations and some of these clinical trials and some of these question and answer sessions. When your doctor says, or the nurse says, do you have any questions? Ask, ask some questions, be involved in that conversation, because it turns into data and that data needs to be captured in order for our health care, in order for our treatment plans to be more tailored, particularly when it becomes more and more automated, more and more artificial intelligence inserted into these. We need to be accounted for. So that that is my soapbox.

Speaker 1:

That is not. That is real talk, is what I call that. I want to sing this over to Damon because you know, when I met Damon he was at Microsoft. I look at him as somebody you know, he knows he understands what's happening from a technological plane and I remember meeting him at the National Association of Health Service Executives and first thing we talked about is that. You know, it just seems to be that what's happening in digital technology is highly skewed just to the same point you just said. Now here's the question I have what is the accountability? If you understand, you're a technologist, you're creating a product, let's say, a device, just like Dr Tanya just talked about. Who's accountable? You know what? We really didn't test this in a certain geography. We didn't take really maybe it's not for everybody, it's for certain people. I mean, who does that?

Speaker 3:

Well, everybody, unfortunately. I mean, it really is that widespread. And, just as a side note, Dr Tanya and I have published an article on the implicit bias in artificial intelligence. So when we talk about explicit, implicit, explicit bias, I don't like you because you are feeling whatever mic that is. That's your explicit bias. You're too black, you're too white, you're too loud, too old. Implicit bias is oh, I like you, but dot dot dot, and so it's softer. Like you, but dot, dot dot, and so it's softer, and it's really not as harsh and abrasive assertive the word I used earlier it's not as assertive.

Speaker 3:

So really, when we look at implicit bias, okay, yeah, you're a good enough person, but because you're African American, well then I need to add a coefficient of X or decrease a coefficient of X to whatever I put onto your chart, and so that's the start of it. Dr Tanya said, when you want that accountability, and you want it at the start, when you create these, when you design them, but then you need them later on in the testing and in that testing and when you do in the market, yes, you need to go to different folks in the market and test it on them, but you also need diversity in the team that's designing and doing the tests, so you can have skewed tests. We found out years after the fact that SATs were slightly skewed Go figure, years after the fact that SATs were slightly skewed, go figure. So when you say that how is it possible for these major healthcare manufacturers to design this equipment and have the bias built in, they're bas, a major hospital facility, and the hospital says, well, I need my data to look this way, and they go.

Speaker 3:

But we've looked at it and this is a bias-free way and they don't mesh, they don't get the sale. So they match up with the health record, the systems, the processes, what is already in place. I'm not going to say this to allay blame, but when you look at a Cerner, when you look at an Epic, those are two organizations that basically drive the electronic health record industry in the world. So if the biases are implicit and baked into what they're doing, any organization that then tailors itself to support those electronic health records now has carried forward that bias. And so it is subtle and soft and, under the covers, dangerous, because everybody says, well, no, I'm sure it's okay, I'm sure somebody's checked it out, and so they don't. And when you don't do that, you allow that bias to continue to manifest itself.

Speaker 1:

Man, wow, we need to get a handle on this. What you said there is like we're we're continuing the same problem that we had even before we had said technologies. It's the human bias that has been and unfortunately, we have to go back to America's roots. Let's just say that because they were separate and unequal and even though you had laws in the books in the 60s, certain attitudes still prevailed, and this is a case in point, and this had not for healthcare, but it was in law.

Speaker 1:

It happened in Alabama when they were trying to implement when they actually implemented an AI system. And what they did? They started pulling data from all the court records over, let's say, a 30 or 40 year period of time and started using it against court cases. Well, when an African-American male came up before the court and the recommendations for sentencing or whatever it may be came out of the AI, you got to remember in Alabama, in the you know 60s, 70s, even before, even after, highly biased or you know African-American males. So when it came to any kind of judgment that came out, it was harsher and they began to look at this like, wow, this person over here got let's just say it was two years for a similar crime. This this person over here got 20 years.

Speaker 1:

Why is the machine recommending that We've got to be very careful about what we're doing? Maybe it wasn't intended that way, but there are consequences that take place, and so now I'm going to bring it back to you. Know, we just talked a little bit about health equity. Now we start getting into precision medicine. We're trying to come there. Do you feel the fabric of precision medicine could be a way to get us to a higher level of an unbiased look at these?

Speaker 3:

kinds of data. Let me take this one first. So you talked about it from a legal perspective and I'm actually very familiar with how they're doing that. Other states are trying to pursue similar guidelines. Let's go back to health.

Speaker 3:

Body Mass Index was designed by a European scientist when he wanted to design what the ideal man is, and so he looked around him and found European men around him, not even women, and BMI was then based on his studies back then of not studying women but only studying white men.

Speaker 3:

And it then kind of came down to the point now where it is such an intrinsic part of health diagnoses today that it's just people know what BMI is, but it never accounted for the higher amount of muscle mass that African Americans have and are still healthy, or the lower levels of muscle mass that Asian Americans may have over their Eurocentric counterparts, and their numbers are often skewed.

Speaker 3:

And now that gets baked into these systems.

Speaker 3:

So when you start to say how can precision medicine uncover what this looks like, we have to start tearing away those fundamentals of our healthcare system and really identifying who are you as an individual and what does healthy look like for you as an individual not comparing you to a standard, because a lot of those standards were developed back in the 40s and 50s, where they didn't have enough data on Hispanics, asian Americans, african Americans or Black Americans, and so they made assumptions, and those assumptions still exist today as standards. What precision medicine does is it puts those to the side and says, okay, who are you, and take some more comprehensive view of you as an individual and then starts to tailor how we can treat you. Now Dr Tanya will go into the genetics and the genomics and the pharmacogenomics and the epigenetics and the other stuff, words that it took me a really long time to learn because they're another language. But and I want to come back to this later on sometimes your own doctor may not know, and that's critically important too.

Speaker 1:

I want to hear from Dr Tanya.

Speaker 2:

So, damon, hit the nail on the head and I'm going to address your question. Precision medicine has an opportunity to compare you to yourself and just inherently saying that you can see how that might adjust the standard, because now the standard is you right. And so it's not necessarily reinventing all of that code because no hospital or healthcare system I mean, let's just be very honest the cost of recode at that scale is massive and no one wants to take it on, especially in our system where providers, nurses, are woefully understaffed. It's a nationwide fact. So let's not try to boil the ocean there. But precision medicine has an opportunity to narrow that focus a little bit.

Speaker 2:

Take into accountability I'm going to say it not only your genetics but your genomics. So if you live, for example, genomics is not only your genes but other influences like your environment, like your diet, like your lifestyle. You can. And when Damon mentioned epigenetics, that is where your particular genetic makeup is adjusted based on you how you're eating, your alcohol consumption is a very real one, what can be passed down over generation, so on and so forth, and that can slightly tailor. Really pollutant environments can adjust how those genes turn off and on, not their existence, but whether or not. They're off and on. So all of that to say, when we start looking at precision medicine and we start taking in a holistic view of an individual versus some sort of best practice from the 1950s, you can see how precision medicine has an opportunity to really tailor a treatment or a care plan not only to you as an individual, but the population that you may be a part of.

Speaker 2:

And now we start getting into, like I said, not boiling the ocean, but we can actually start to have drug dosages tailored to how much you weigh. Have you ever seen a really frail person, who's maybe elderly, get the same dosage of a medication of someone that's like 20 years old and twice their size? Again, that's automated. It's not on purpose, but this is the kind of thing that happens. And so tail start demanding care at home because you can. These days people don't want to go to the doctor just for something simple if they can avoid it. I am being a little elitist when I say that, because there's an entire separate section of the population where that is the only option that they have due to infrastructure issues where they live, so on and so forth. So think bandwidth. However, take that out of the picture and you start thinking about the capability of being treated at home. The possibilities are endless. It's a green playing field Grant. It's a green playing field grant. It's a green playing field. It's this is important information.

Speaker 1:

You both have given great information and great information to the audience about the why and the what. We still want more information about frenetic. What is it that you are doing? How are you making a difference in this incredible world that we have of healthcare and healthcare delivery and research? Talk to us more about that.

Speaker 3:

I'll let you start and then I'll Okay.

Speaker 2:

Okay, I sometimes say Damon is my interpreter, so I don't say that sometimes I actually say that quite a bit. So you've heard me say you know frenetic is really applying precision medicine to research and healthcare. But how we do that is intentional. So if you are familiar with this particular industry, you'll recognize some of our capabilities like having clinical genomics, a toxicology lab, clinical research, the ability to conduct clinical research, the ability to have data, high performance computing with that research data. What that is is often done in academia. So think John Hopkins, rutgers Columbia. What we do is largely contained in academia and we are bringing that out of that particular silo. There's nothing wrong with that. But again, our mission is to take these capabilities and bring them to all people right and remove some of those silos. So that's our how and we had to look at where is the gap.

Speaker 2:

You know, I've heard you say in the past, grant, we need to own it. You know we got to own it. And so how do we own the data? Well, the data in this life cycle starts with the sample collection, to be perfectly frank. So that's a blood tissue, saliva, urine, right, that is a sample collection. We need to own that process, import that data into our software, into our data lake right, which is called iConcordia that's our software solution data lake right, which is called iConcordia that's our software solution and we control that and then being able to do something with that sample so we can sequence it. We have our own lab. We will sequence that data to the depth and the capacity of the request.

Speaker 2:

You know, everybody doesn't need to do a whole genome sequence, right? Sometimes you're just trying to find a biomarker, or you're just trying to find if you're predispositioned to a particular condition, right? So all testing is not the same, but the point is we have the capability to do that and then again take that information, import it into your medical record, give you that detailed report that goes beyond a yes, no type of report, really get down and explain what those test results mean and then, on the research side, being able to talk with our sponsors. So a sponsor is any third party that's paying for research. So think about the FDA, think about Pfizer, you know all of these other organizations. Those are sponsors. So the sponsor they have their own goals and when they come to a company like Phrenetic, they're looking for us to give them diverse data sets.

Speaker 2:

How can we go out to our patients, how can we make whatever they are trying to produce? So think, a new drug, new therapeutic, new something, something novel. Right, we want to actually be able to communicate that to those physicians, to communicate that to those patients and again, take it out of the suburbs, take it out of academic communities. That's frenetic and I know I'm giving like a 10,000 overview and Damon hasn't given me the stop talking.

Speaker 1:

We need that 10,000. But I think we get the general idea. Sure, so, damon, give us your piece.

Speaker 3:

So, as a growth officer for Fernetic, it's my job to figure out how to translate that genius into market readiness. And so what I try the way that I try and envision it and approach it is how can I bring that set of capabilities to hospitals, private practices, universities, institutions and others to show them how these capabilities can support them in what they do, can support them in what they do? So, if you think about a typical hospital, they may be using, say, genetic and genomic testing, but they may not. The penetration is really only about 60%. When we get to FQHCs. It drops down to 50% for genetic, but genomic drops down to about 30%. So they don't have these tools in their tool belt to help the patient who walks in the door to understand what may be wrong.

Speaker 3:

The good thing about genetics and genomics is it can help to identify what you may have a strong predisposition for. So if you got diabetes, you got it and the test is going to say it, and okay, that's fine. But now what about your son, your daughter, your niece, your nephew, your sister, your brother? They can get tested. Cancer same thing. They can get tested and they can identify if they have a predisposition for that chronic illness. Well, if we're not using that as a tool in the tool belt, we're waiting for people to get sick, and when they get sick we diagnose them, we treat them and the costs are higher. But if we can proactively manage that wellness, we now have the opportunity to say, ah, hold up. If you eat better, exercise more, do X, y and Z, you can kind of put that off for maybe another five, 10 years or maybe indefinitely. That begins to save an FQHC about $5,000 a year per patient, and so we want to increase the opportunities for that engagement. We also want to go to universities and we're looking at the opportunities of going to a university and building a lab in partnership with them so that they can do the research and where we can own and operate it. But they can get the benefits of having that laboratory right there as they go for higher research status, et cetera.

Speaker 3:

A nonprofit who's doing the work in the community may not necessarily necessarily understand how genetics and genomics really can change a person's outlook when you factor in, say, the social determinants of health. So now we can educate them on how they can go to their churches, their synagogues, their mosques in their community and tell people what is available. So when they go to the doctor and the doctor goes, you know, they say, well, I don't feel good. And the doctor goes well, no, everything looks fine, I'd like to get a test. And they have that right and it's covered by insurance. Those are the kinds of conversations where we come in. We want to have those conversations, we want to foster them, we want to support them.

Speaker 1:

That's a lot to unpack, meaning I love everything. Both of you just said like, yeah, we need to do this yesterday. Why aren't we doing this? I even remember what you were talking about. You know fairly qualified health centers. Most of those are people that are being treated, are people of color, black and brown people. So, wow, 30%, 70%, that's a huge amount of people that aren't being treated in that fashion. Lots of room for expansion in that area.

Speaker 1:

I remember and this is back in the 70s, I'll date myself that me and my brother got tested just for these sickle cell traits. So, thanks, right, you got tested. Oh, tested, just for the sickle cell trait. So you got tested, oh, do you have the sickle cell trait or not? Then you kind of knew like, all right, you might have a trait, but if you get to someone else's trait, your child could potentially get sickle cell. So it was there, right, this predisposition, what you guys are talking about, I love that. So why weren't we doing that, especially when and I know this for the blind community our consumption of salt is too high, our consumption of sugar is too high, our obesity rate is too high? There are certain things that we're doing that we probably could change and if we have more awareness. I'm going to speak to the other elephant in the room when we talk about ownership, right, we got to take ownership as a people for our health, our preventative health, you know. Health and wellness. Is that what your nonprofit arm is doing?

Speaker 2:

Help me understand that more clearly so glendale research foundation, by the way, it's volunteer run and led right, so that alone says we are really focused on getting the word out. So, when it comes to what you just said people not being aware that's where glendale research foundation comes in, not only for working with other community-based organizations. To what you just said, people not being aware that's where Gwendoly Research Foundation comes in, not only for working with other community-based organizations you know, such as churches or other community-based groups. Think about we were just contacted this is a really recent anecdote we were just contacted by an organization that is going through pre-contamination, just testing their theory on a particular solution, and they are leading with the fact they want to make sure their solution works in underrepresented communities. So they called us to see what was the best way to go about that and how could we assist them in getting in those rooms. Could we assist them in getting in those rooms? Because they were self-aware enough to say we wouldn't be welcome because they're Caucasian and I appreciate their candor and there was no political correctness or beating around the bush. They want to make sure that what they are creating as it's a new solution. They're looking for FDA approval, looking for the whole thing. This is brand new not on the market, not available and they are leading with. How can we get this into everyone's hands? How can we make sure this works for everybody? And also, we know that we don't know how to penetrate those spaces. Can you help? That is a perfect example of what our nonprofit arm does, right, because frenetic is going to be focused on. Well, we can help you with your clinical trial, right, but Winona Lake Research Foundation is going to be focused on.

Speaker 2:

Have you tested this on different communities, like deaf and hard of hearing? Have you tested this on communities that are maybe suffering from rheumatoid arthritis? Do they have the dexterity to use your solution? Right, and just really thinking outside of the box? And then we start getting into. Think about what I just said deaf and hard of hearing, rheumatoid arthritis, especially early onset arthritis. Adding to that equation melanation Are you black and brown, plus some of these other conditions? So now you're adding in even more barriers and sometimes even more inequitable access to that care. So that let them know. Are you thinking about how this is going to be insured? This has to be covered by CMS. This can't be only private pay or for people that can afford out of pocket Right, and so you start unpacking these conversations in a way that our nonprofit can do that our for profit can just naturally. Let me know if that answers your question.

Speaker 1:

No, it certainly does, Damon. You got any addition?

Speaker 3:

not really. Um, when we look at the, when we look at the how this breaks down, she brings up a fantastic point saying these organizations can, can come to us and we welcome, we want them to. I think one of the big challenges that we have in our community is we circled the wagons. We had some things go on historically and everybody points to Tuskegee and they go, wow, that was it. No, there's been a whole lot more that's gone on, and not just the African-American community, also the Hispanic and Latinx community, the indigenous populations circled the wagons. So, okay, no, no, no.

Speaker 3:

We don't trust you as an organization. We don't trust that you'll use our data correctly. We don't trust that you have our best intentions at heart and, as both organizations, we want you to come to us. We want to have that conversation. We want you to believe in our community enough to take that time and that consideration and we want to help. And that's part of the reason why, when we look at universities, we want to work with universities to develop the next generation of researchers, of clinicians, of community outreach experts, of people who care and give a toot about health care and health outcomes.

Speaker 3:

We want people, invite people, beg people to come and speak with us so that you can learn some of the statistics that we've pulled together around the disparities in gender and persons who are differently abled. It's a fascinating, fascinating statistics show. We almost expect that in the inner cities, the inner cities, there are going to be health disparities. We know that. But the numbers are very eerily similar to the same disparities in rural areas, to the same disparities in rural areas, and we know that the populations are very different. So come to us and allow us to work together with you. We are not just trying to save minorities, we want to save marginalized communities and sadly that's also women, that's veterans. Those are the people who live next door to us, who live in our house, who are our sons and daughters. Come to us and have these conversations, ask these questions. We're happy to answer them.

Speaker 1:

Yes, I'm glad you brought all this voices and I hear this historical context and they were saying certain things that you're saying. Like you know, there's just a disproportionate amount of people being affected by certain things that aren't with others, but then we have this huge population that was not being involved. They're not doing the trial, they're not doing this and doing that. And then you go back to why and the why always comes down to well, you treated these people poorly. Let's just call it when you treat this population poorly, and your answer to that was not a very good apology. I just I mean, I was very honest, as you know.

Speaker 1:

Did you ever apologize to specifically Black people? Hey, you know what? I'm sorry that I experimented on you without your will and caused great pain. I'm sorry. I'm sorry that I caused great pain in cervical cancer when I you know, illeg Minnesota was founded on 38 Native Americans that were hanged and then their bodies exhumed without the tribal knowledge. I'm sorry I did not hear that, or I didn't hear it loud enough to where it made a difference in those populations, because it's not so much. You said you were sorry, but did you take any action behind it? What did you do? Or you just left it the way it is, and then, if you leave it the way it is, you're going to keep getting the same result. So I applaud what you both are doing. Before I let you go, you've got to tell us how to donate, because, you've said it before, one is a for-profit, one is a nonprofit. How do we donate to your organization?

Speaker 2:

You can donate to Gwendoly Research Foundation. It's a tax-deductible donation because it is a 501c3 organization, so your donations are all tax-deductible. We have a couple tiers for corporate donations, particularly corporate donations for ACRP. We can provide a link to that. Our donation page is on our website, which is gwenlilyorg Lily, with one L and Grant, you'll be able to put this in text. Okay, then we have individual donations as well. We'll have a link to that, and then just general corporate sponsorships, because, again, we do want to work with organizations that have a commitment to moving this forward, and there will be a link to that.

Speaker 3:

So that's how you would donate also like to add that, as we think about frenetic, it's not a nonprofit, so donating to us is we'd love to work with you. We'd love to be the organization to provide your testing for you, be it basic clinical diagnostics or next generation sequencing. We're developing mobile laboratories where we can partner with you, if you're a provider, if you're a university, to go out into your community and provide these tests on site in the community. So you don't have to get people to come in, we'll go to them and we'll do it right there and in under an hour we can tell you oh OK, hey, wait a minute, let's have some conversations, let's talk about some things. So that's how you can work together with frenetic as well.

Speaker 1:

Awesome. This has been a fantastic, fantastic episode. I want to encourage both of yours entire audience to tune in to all the episodes of follow the brand at five star medium, that is the number five. A star, that's B for brand, d for development informastercom. Before I let you leave, you're going to tell us I know you said it was during the Jazz Fest, but what is the exact date for the ACRP?

Speaker 2:

April 24th through 27th 2025 in New Orleans. The conference will be held at the Hyatt Regency, new Orleans and we will be spot and center. We cannot wait for this.

Speaker 1:

All right, all right, I love it. Thank you again for being on the show. Take care, and we will see you soon hopefully sooner than you think in New Orleans.

Speaker 2:

Yes.