March 2, 2025 • 47 mins
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!
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Episode Transcript
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Speaker 1 (00:02):
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 getclose to the 200th show on
Follow the Brand.
I couldn't think of a betterway to really get to this
milestone without.
We've got Dr Tanya, we've gotDamon House here and we're going
(00:27):
to have a real discussion.
It's not just about technology.
Last time we were here, we weretalking about cybersecurity.
We were talking about thingsthat are going on in the
emerging technology space.
With Damon House, today, we'regoing to talk about some things
that are very, very importantfor a lot of people and
(00:49):
especially underrepresentedcommunities that we all
represent.
We're talking about awarenessto action, advancing health
equity and precision medicinetoday, and we're going to talk
about some how do we take actionaround some things that are
very, very important.
So we're talking health equity,precision medicine and the
(01:10):
urgent need for action.
So I want to introduce you now.
First we'll go to Dr Tanya andthen, right after she finishes
up, let's go over to David Howes, get us introduced and let's
talk about this importantsubject.
Speaker 2 (01:24):
Okay, well, I will not get on a soapbox so early.
My name is Dr Tanya MarieMartine Mercado, dr Tanya for
short.
I am the CEO of Phrenetic.
Phrenetic is a biomedicalresearch organization that is
dedicated to bringing precisionmedicine to research and
healthcare.
The reason why this isimportant is the life cycle of
(01:45):
how you get yourover-the-counter medication has
an entire back office cycle,starting with research and
ending with patients.
We, as patients, get thosedrugs after research has
occurred, it's been releasedinto the commercial space and
(02:07):
then approved by your doctor, bythe FDA, and then prescribed by
your physician.
So that's the life cycle ofmedication, of treatment, of
care Starts with research, endswith healthcare execution.
And what we're going to addresstoday is how Black Brown, other
underrepresented communitiesare not involved in that cycle
(02:30):
and are being woefully left outon a consistent basis, meaning
that treatments, medication andso on and so forth is not
tailored to us.
Speaker 1 (02:42):
Interesting.
Speaker 3 (02:42):
All right, damon, let's hear from you Not much
left to be said but hello, myname is Damon House.
I have the joy of working withthis woman every single day to
hear this brilliance and much,much more.
But yes, as she's talking aboutit, when we talk about the
efficacy of how drugs aredeveloped, when you go to a
(03:05):
store and you say I'd likeTylenol or I'd like a
prescription from your CVS, yourdoctor has written you a
prescription that's tested forthe everyone, not you as the
only one, and so one of thethings that we want to do is we
want to definitely take a lookand peel that back to understand
what those differences looklike.
Were those medicines, thosedrugs, were those treatments
(03:27):
tested on people like you?
Were they tested in your agerange, your gender range?
Oftentimes, women don't get asmuch love in the clinical trials
as men do.
We can talk about things likeBMI and the stigmas that are
associated with models that havebeen developed around
(03:49):
Eurocentric males, but that hasfollowed us down into some of
the processes and procedures inhealthcare electronic health
records, prescriptions,treatment plans, even things
that they do in criticalemergency situations and so we
want to have this conversationto talk about the disparities in
(04:12):
marginalized communities, underunserved, underrepresented
communities that don't activelyparticipate in the health care
system, and when we don'tparticipate, it's harder for the
system to support us becausewe'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
(04:36):
might pull out one or two, mightget up on it and we might give
our own sermon today.
Speaker 1 (04:40):
Well, this is important.
We've got to have these kind ofdiscussions because they're not
readily had and we need toinform the public.
This is why we have an open mic, an open forum.
Now you both are part of whatwe know as GLRF, which is the
Gwen Lilly Research Foundation,which you started with the
(05:01):
frenetic.
And then you know, damon,you're the chief growth officer
there.
But you both are going to be atthe upcoming conference for the
ACRP, now that's theAssociation of Clinical Research
Professionals.
Talk to us about, first of all,why you started this
organization and what is yourintent at the ACRP.
Speaker 2 (05:27):
I'll go ahead and take that one.
So I started Gwendoly ResearchFoundation, which is named after
my mother and her favoriteflower.
I started that organization asa non-profit to really focus
where our for-profit could not.
So Gwendoly Research Foundationis the nonprofit, philanthropic
(05:49):
arm of Phrenetic and it goesdeeper into the community to
provide that education and thatoutreach really focused on the
nuts and the bolts.
When we say translatingresearch into care, that's
actually going out into thecommunity and talking about
research, making it a littleless scary, bringing that
(06:11):
information and havingconversations that you may not
be having with your physician ina very practical way.
So, as Phrenetic is focused onthe science, the genetics and
the genomics and really gettingdeep into the research and
provider side of it, the WilliamLee Research Foundation is
taking that, breaking it downinto actionable chunks.
We're not just providinginformation.
(06:33):
The goal is to give actionaround that.
Ok, so now you know this, whatare we going to do about it?
What can you do in yourcommunity?
What can you do in your family?
What can you do as anindividual?
Right, the Association ofClinical Research Profession
Professional is the premierresearch conference and, as the
executive director and presidentof the Gwendoly Research
(06:53):
Foundation.
Where Frenetic goes, gwendolygoes, and Damon is one of our
board members at the GwendolyResearch Foundation, so he's
Frenetic's chief growth officerwhen he goes, gwendoly Research
Foundation, so he's Frenetic'schief growth officer when he
goes, gwendoly ResearchFoundation goes.
And it gives us this wonderfulopportunity to bring what
Frenetic is doing and breakingit down into the community right
(07:14):
.
So this conference this yearfor ACRP is being held in New
Orleans, which is where I wasborn and where I'm from, so
there's a lot of personalattachment to the location.
But it also gives us a veryunique opportunity to leverage
my friends, my family and makethem more aware Our research,
(07:35):
I'm sorry, our academicinstitutions that we're
partnering with, like Xavier andSouthern.
There we can give them somevisibility into the research and
the health care by actuallybeing out in the community,
which is the point.
It's enough to.
We're trying to move away fromresearch constantly being in
these circles and silos that theaverage person, just the
(07:57):
average individual, isn't awareof.
We're trying to make it morenormal, making that
accountability a normal part ofyour everyday, and the ACRP
conference in New Orleans givesus just a unique opportunity to
do that, not only becauseFrenetic is speaking as an
organization.
We have a booth, we have apresence there as an
(08:18):
organization.
I'm speaking, damon is speakingon a larger stage with Dr
Claude Lewis-Charles fromMicrosoft.
They're sharing a tech expostage and we have a lot of
activities planned just in andaround the community.
We're making sure we're havingdinners that are at restaurants
(08:40):
owned by community individuals,we're taking ourselves out and
we're talking to members of thecommunity and, even more fun,
this is being held during JazzFest, so it gives us a big
opportunity to you know, reallybe authentic in a fun way and
again take some of the stigma,the scariness away from research
(09:01):
and really give people apractical understanding of what
it is.
Speaker 1 (09:05):
David.
Speaker 2 (09:05):
I'd love to hear your perspective on it because, like
I said, I don't want to talkall day, but go ahead.
Speaker 3 (09:10):
Well, Jazz Fest.
I promise we won't do anysinging.
I promise we, we, when we getdown there and I have to say
Dylan and Grambling, because ifI don't, then they're going to
get sore.
I don't need the hate mail.
We want to touch on minorityserving institutions and I'm
sure we'll get into that in thisconversation.
(09:31):
But, getting down, there is anopportunity for us to see our
peers in research.
I guarantee there will be veryfew other organizations that
(09:52):
look like us, that have themessage, the passion, the
mission, the vision, the goalslike us and we did.
She and I did a little bit ofresearch in trying to find
organizations that have labsthat do the type of work that we
do, and out of the 200 andalmost 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,
(10:13):
really quickly.
So this is an opportunity forus to get into these types of
spaces and assert our voice andmake sure that we're not
belligerent, we're not angry,but we are assertive in the
needs for democracy, for thedemocratization of clinical
(10:34):
trials, we are assertive in theneed for addressing the
disparities in communitiesaround health outcomes and we
are assertive in saying thatwe'd love to partner with other
organizations that want to worktogether with us, but we need to
make sure that we're all movingin the same direction Now we've
got some input from both of you, and I always like to jump
(10:58):
right in and talk to theelephant in the room and for me,
to the elephant in the room,and for me, the elephant in the
room is around.
Speaker 1 (11:06):
It's an area of health equity.
But what happens when you, apopulation of people, are not in
the room for research and then,like right now, we have a
measles outbreak that we haven'thad in 25 years?
What happens when a whole groupof people, when they come out
(11:28):
with different medicines andvaccines, are not accounted for?
I want to bring this over to DrTanya.
What are the implications ofthat?
Speaker 2 (11:40):
You have a lot of implicit bias buried deep into
code, and what I mean by that iswhen we look at some of the
tools and most people have beena patient.
You have seen a doctor at somepoint in your life, even just to
go to school in the US, so onand so forth.
These days, very rarely are youseeing doctors and nurses write
(12:04):
things down.
It's a lot of computer-basedinteraction and there's a lot of
automation.
There's a lot of tools in place, not only to help create
measurements and diagnosis anddosages of medication, but even
just simple things like, forexample, the pulse socks, the
little thing on your finger thatdidn't accurately measure
(12:24):
melanated skin.
That's a very real, very recentexample of what that means not
being in the room.
Again, we need to be realisticand remember when some of these
things were created,particularly tools and resources
like a pulse ox or other typesof technology it was based on
(12:47):
Eurocentric, male, eurocentricindividuals, right, right.
So now you fast forward alittle bit and you start
automating that information.
The data hasn't really beenimproved in that.
You can see that you know justresearch any clinical trial and
(13:11):
clinical trials dot gov and lookat their diversity, breakout,
which is required to be reported.
So you can fact check, pleasedo.
Actually, you can fact checkthis information, and so when
you are not included, in thedesign phase of some of this.
So think of research, likeyou're designing a drug, you're
designing a treatment, you'redesigning a novel therapeutic.
If you are not included in theroom, if you're not included in
that data set, then it's not foryou.
It's just that simple.
How can you be included?
(13:32):
And so take the emotion out ofit and just look at it as ones
and zeros.
Be included, and so take theemotion out of it and just look
at it as ones and zeros.
Your ones and zeros weren't inthat data set because you
literally were not there.
You were not represented.
So now fast forward and you havethings like the pulse ox is
just like I said, that's sorecent realizing that melanated
people.
It doesn't capture it the sameway.
And what are they doing?
(13:53):
They're trying to create a newone, but they had to get to the
place where we didn't know thatwas inaccurate, right?
And think of how many othertools.
Think of EGFR, the kidneymeasuring.
Think of vaginal birth aftercesarean, black and brown people
, the measurements.
The mathematical calculationfor black and brown people adds
(14:17):
more data than necessary to makeit inequitable, based on stigma
.
That has long been sincedisproven Right.
And so when you start thinkingabout these things and you start
applying it to again, theeveryday person's health care.
When you go to the doctor andthat doctor or that nurse that
is seeing you is looking ontheir computer, they're not
(14:38):
personalizing that interactionto the point.
Well, I don't like you becauseof your skin colors.
I'm going to do somethingnefarious.
No, this is code you know.
And also get over yourself.
I'm going to be real honestabout that.
This is code.
And take some accountabilityand think about the fact that
you need to be involved in someof these conversations and some
of these clinical trials andsome of these question and
(15:01):
answer sessions.
When your doctor says, or thenurse says, do you have any
questions?
Ask, ask some questions, beinvolved in that conversation,
because it turns into data andthat data needs to be captured
in order for our health care, inorder for our treatment plans
to be more tailored,particularly when it becomes
more and more automated, moreand more artificial intelligence
(15:23):
inserted into these.
We need to be accounted for.
So that that is my soapbox.
Speaker 1 (15:29):
That is not.
That is real talk, is what Icall that.
I want to sing this over toDamon because you know, when I
met Damon he was at Microsoft.
I look at him as somebody youknow, he knows he understands
what's happening from atechnological plane and I
remember meeting him at theNational Association of Health
Service Executives and firstthing we talked about is that.
(15:51):
You know, it just seems to bethat what's happening in digital
technology is highly skewedjust to the same point you just
said.
Now here's the question I havewhat is the accountability?
If you understand, you're atechnologist, you're creating a
product, let's say, a device,just like Dr Tanya just talked
(16:12):
about.
Who's accountable?
You know what?
We really didn't test this in acertain geography.
We didn't take really maybeit's not for everybody, it's for
certain people.
I mean, who does that?
Speaker 3 (16:25):
Well, everybody, unfortunately.
I mean, it really is thatwidespread.
And, just as a side note, DrTanya and I have published an
article on the implicit bias inartificial intelligence.
So when we talk about explicit,implicit, explicit bias, I
don't like you because you arefeeling whatever mic that is.
(16:45):
That's your explicit bias.
You're too black, you're toowhite, 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, andso it's softer, and it's really
not as harsh and abrasiveassertive the word I used
(17:08):
earlier it's not as assertive.
So really, when we look atimplicit bias, okay, yeah,
you're a good enough person, butbecause you're African American
, well then I need to add acoefficient of X or decrease a
coefficient of X to whatever Iput onto your chart, and so
that's the start of it.
Dr Tanya said, when you wantthat accountability, and you
want it at the start, when youcreate these, when you design
(17:31):
them, but then you need themlater on in the testing and in
that testing and when you do inthe market, yes, you need to go
to different folks in the marketand test it on them, but you
also need diversity in the teamthat's designing and doing the
tests, so you can have skewedtests.
We found out years after thefact that SATs were slightly
(17:55):
skewed Go figure, years afterthe fact that SATs were slightly
skewed, go figure.
So when you say that how is itpossible for these major
healthcare manufacturers todesign this equipment and have
the bias built in, they're bas,a major hospital facility, and
(18:16):
the hospital says, well, I needmy data to look this way, and
they go.
But we've looked at it and thisis a bias-free way and they
don't mesh, they don't get thesale.
So they match up with thehealth record, the systems, the
processes, what is already inplace.
I'm not going to say this toallay blame, but when you look
(18:39):
at a Cerner, when you look at anEpic, those are two
organizations that basicallydrive the electronic health
record industry in the world.
So if the biases are implicitand baked into what they're
doing, any organization thatthen tailors itself to support
those electronic health recordsnow has carried forward that
(19:02):
bias.
And so it is subtle and softand, under the covers, dangerous
, because everybody says, well,no, I'm sure it's okay, I'm sure
somebody's checked it out, andso they don't.
And when you don't do that, youallow that bias to continue to
manifest itself.
Speaker 1 (19:22):
Man, wow, we need to get a handle on this.
What you said there is likewe're we're continuing the same
problem that we had even beforewe had said technologies.
It's the human bias that hasbeen and unfortunately, we have
to go back to America's roots.
Let's just say that becausethey were separate and unequal
(19:49):
and even though you had laws inthe books in the 60s, certain
attitudes still prevailed, andthis is a case in point, and
this had not for healthcare, butit was in law.
It happened in Alabama when theywere trying to implement when
they actually implemented an AIsystem.
And what they did?
(20:10):
They started pulling data fromall the court records over,
let's say, a 30 or 40 yearperiod of time and started using
it against court cases.
Well, when an African-Americanmale came up before the court
and the recommendations forsentencing or whatever it may be
came out of the AI, you got toremember in Alabama, in the you
(20:36):
know 60s, 70s, even before, evenafter, highly biased or you
know African-American males.
So when it came to any kind ofjudgment that came out, it was
harsher and they began to lookat this like, wow, this person
over here got let's just say itwas two years for a similar
crime.
This this person over here got20 years.
(20:58):
Why is the machine recommendingthat We've got to be very
careful about what we're doing?
Maybe it wasn't intended thatway, but there are consequences
that take place, and so now I'mgoing to bring it back to you.
(21:25):
Know, we just talked a littlebit about health equity.
Now we start getting intoprecision medicine.
We're trying to come there.
Do you feel the fabric ofprecision medicine could be a
way to get us to a higher levelof an unbiased look at these?
Speaker 3 (21:34):
kinds of data.
Let me take this one first.
So you talked about it from alegal perspective and I'm
actually very familiar with howthey're doing that.
Other states are trying topursue similar guidelines.
Let's go back to health.
Body Mass Index was designed bya European scientist when he
wanted to design what the idealman is, and so he looked around
(21:58):
him and found European menaround him, not even women, and
BMI was then based on hisstudies back then of not
studying women but only studyingwhite men.
And it then kind of came down tothe point now where it is such
an intrinsic part of healthdiagnoses today that it's just
(22:23):
people know what BMI is, but itnever accounted for the higher
amount of muscle mass thatAfrican Americans have and are
still healthy, or the lowerlevels of muscle mass that Asian
Americans may have over theirEurocentric counterparts, and
(22:44):
their numbers are often skewed.
And now that gets baked intothese systems.
So when you start to say how canprecision medicine uncover what
this looks like, we have tostart tearing away those
fundamentals of our healthcaresystem and really identifying
(23:06):
who are you as an individual andwhat does healthy look like for
you as an individual notcomparing you to a standard,
because a lot of those standardswere developed back in the 40s
and 50s, where they didn't haveenough data on Hispanics, asian
Americans, african Americans orBlack Americans, and so they
(23:28):
made assumptions, and thoseassumptions still exist today as
standards.
What precision medicine does isit puts those to the side and
says, okay, who are you, andtake some more comprehensive
view of you as an individual andthen starts to tailor how we
(23:48):
can treat you.
Now Dr Tanya will go into thegenetics and the genomics and
the pharmacogenomics and theepigenetics and the other stuff,
words that it took me a reallylong time to learn because
they're another language.
But and I want to come back tothis later on sometimes your own
doctor may not know, and that'scritically important too.
Speaker 1 (24:09):
I want to hear from Dr Tanya.
Speaker 2 (24:12):
So, damon, hit the nail on the head and I'm going
to address your question.
Precision medicine has anopportunity to compare you to
yourself and just inherentlysaying that you can see how that
might adjust the standard,because now the standard is you
(24:35):
right.
And so it's not necessarilyreinventing all of that code
because no hospital orhealthcare system I mean, let's
just be very honest the cost ofrecode at that scale is massive
and no one wants to take it on,especially in our system where
providers, nurses, are woefullyunderstaffed.
(24:56):
It's a nationwide fact.
So let's not try to boil theocean there.
But precision medicine has anopportunity to narrow that focus
a little bit.
Take into accountability I'mgoing to say it not only your
genetics but your genomics.
So if you live, for example,genomics is not only your genes
(25:19):
but other influences like yourenvironment, like your diet,
like your lifestyle.
You can.
And when Damon mentionedepigenetics, that is where your
particular genetic makeup isadjusted based on you how you're
(25:40):
eating, your alcoholconsumption is a very real one,
what can be passed down overgeneration, so on and so forth,
and that can slightly tailor.
Really pollutant environmentscan 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 westart looking at precision
(26:03):
medicine and we start taking ina holistic view of an individual
versus some sort of bestpractice from the 1950s, you can
see how precision medicine hasan opportunity to really tailor
a treatment or a care plan notonly to you as an individual,
but the population that you maybe a part of.
(26:24):
And now we start getting into,like I said, not boiling the
ocean, but we can actually startto have drug dosages tailored
to how much you weigh.
Have you ever seen a reallyfrail person, who's maybe
elderly, get the same dosage ofa medication of someone that's
like 20 years old and twicetheir size?
(26:44):
Again, that's automated.
It's not on purpose, but thisis the kind of thing that
happens.
And so tail start demandingcare at home because you can.
(27:18):
These days people don't want togo to the doctor just for
something simple if they canavoid it.
I am being a little elitistwhen I say that, because there's
an entire separate section ofthe population where that is the
only option that they have dueto infrastructure issues where
they live, so on and so forth.
So think bandwidth.
However, take that out of thepicture and you start thinking
(27:43):
about the capability of beingtreated at home.
The possibilities are endless.
It's a green playing fieldGrant.
It's a green playing fieldgrant.
It's a green playing field.
It's this is importantinformation.
Speaker 1 (27:57):
You both have given great information and great
information to the audienceabout the why and the what.
We still want more informationabout frenetic.
What is it that you are doing?
How are you making a differencein this incredible world that
(28:20):
we have of healthcare andhealthcare delivery and research
?
Talk to us more about that.
Speaker 3 (28:29):
I'll let you start and then I'll Okay.
Speaker 2 (28:32):
Okay, I sometimes say Damon is my interpreter, so I
don't say that sometimes Iactually say that quite a bit.
So you've heard me say you knowfrenetic is really applying
precision medicine to researchand healthcare.
But how we do that isintentional.
So if you are familiar withthis particular industry, you'll
(28:56):
recognize some of ourcapabilities like having
clinical genomics, a toxicologylab, clinical research, the
ability to conduct clinicalresearch, the ability to have
data, high performance computingwith that research data.
What that is is often done inacademia.
So think John Hopkins, rutgersColumbia.
(29:19):
What we do is largely containedin academia and we are bringing
that out of that particularsilo.
There's nothing wrong with that.
But again, our mission is totake these capabilities and
bring them to all people rightand remove some of those silos.
So that's our how and we had tolook at where is the gap.
(29:43):
You know, I've heard you say inthe 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 lifecycle starts with the sample
collection, to be perfectlyfrank.
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
(30:07):
software, into our data lakeright, which is called
iConcordia that's our softwaresolution data lake right, which
is called iConcordia that's oursoftware solution and we control
that and then being able to dosomething with that sample so we
can sequence it.
We have our own lab.
We will sequence that data tothe depth and the capacity of
(30:27):
the request.
You know, everybody doesn't needto do a whole genome sequence,
right?
Sometimes you're just trying tofind a biomarker, or you're
just trying to find if you'repredispositioned to a particular
condition, right?
So all testing is not the same,but the point is we have the
capability to do that and thenagain take that information,
(30:49):
import it into your medicalrecord, give you that detailed
report that goes beyond a yes,no type of report, really get
down and explain what those testresults mean and then, on the
research side, being able totalk with our sponsors.
So a sponsor is any third partythat's paying for research.
So think about the FDA, thinkabout Pfizer, you know all of
(31:11):
these other organizations.
Those are sponsors.
So the sponsor they have theirown goals and when they come to
a company like Phrenetic,they're looking for us to give
them diverse data sets.
How can we go out to ourpatients, how can we make
whatever they are trying toproduce?
So think, a new drug, newtherapeutic, new something,
something novel.
(31:32):
Right, we want to actually beable to communicate that to
those physicians, to communicatethat to those patients and
again, take it out of thesuburbs, take it out of academic
communities.
That's frenetic and I know I'mgiving like a 10,000 overview
and Damon hasn't given me thestop talking.
Speaker 1 (31:49):
We need that 10,000.
But I think we get the generalidea.
Sure, so, damon, give us yourpiece.
Speaker 3 (31:59):
So, as a growth officer for Fernetic, it's my
job to figure out how totranslate that genius into
market readiness.
And so what I try the way thatI try and envision it and
approach it is how can I bringthat set of capabilities to
(32:19):
hospitals, private practices,universities, institutions and
others to show them how thesecapabilities can support them in
what they do, can support themin what they do?
So, if you think about atypical hospital, they may be
(32:42):
using, say, genetic and genomictesting, but they may not.
The penetration is really onlyabout 60%.
When we get to FQHCs.
It drops down to 50% forgenetic, but genomic drops down
to about 30%.
So they don't have these toolsin their tool belt to help the
patient who walks in the door tounderstand what may be wrong.
The good thing about geneticsand genomics is it can help to
(33:07):
identify what you may have astrong predisposition for.
So if you got diabetes, you gotit 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, yourbrother?
They can get tested.
Cancer same thing.
(33:28):
They can get tested and theycan identify if they have a
predisposition for that chronicillness.
Well, if we're not using thatas a tool in the tool belt,
we're waiting for people to getsick, and when they get sick we
diagnose them, we treat them andthe costs are higher.
But if we can proactivelymanage that wellness, we now
(33:52):
have the opportunity to say, ah,hold up.
If you eat better, exercisemore, do X, y and Z, you can
kind of put that off for maybeanother five, 10 years or maybe
indefinitely.
That begins to save an FQHCabout $5,000 a year per patient,
(34:12):
and so we want to increase theopportunities for that
engagement.
We also want to go touniversities and we're looking
at the opportunities of going toa university and building a lab
in partnership with them sothat they can do the research
(34:32):
and where we can own and operateit.
But they can get the benefitsof having that laboratory right
there as they go for higherresearch status, et cetera.
A nonprofit who's doing the workin the community may not
necessarily necessarilyunderstand how genetics and
genomics really can change aperson's outlook when you factor
(34:58):
in, say, the socialdeterminants of health.
So now we can educate them onhow they can go to their
churches, their synagogues,their mosques in their community
and tell people what isavailable.
So when they go to the doctorand the doctor goes, you know,
they say, well, I don't feelgood.
And the doctor goes well, no,everything looks fine, I'd like
to get a test.
(35:19):
And they have that right andit's covered by insurance.
Those are the kinds ofconversations where we come in.
We want to have thoseconversations, we want to foster
them, we want to support them.
Speaker 1 (35:32):
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 weretalking about.
You know fairly qualifiedhealth centers.
Most of those are people thatare being treated, are people of
color, black and brown people.
So, wow, 30%, 70%, that's ahuge amount of people that
(35:56):
aren't being treated in thatfashion.
Lots of room for expansion inthat area.
I remember and this is back inthe 70s, I'll date myself that
me and my brother got testedjust for these sickle cell
traits.
So, thanks, right, you gottested.
Oh, tested, just for the sicklecell trait.
So you got tested, oh, do youhave the sickle cell trait or
(36:19):
not?
Then you kind of knew like, allright, you might have a trait,
but if you get to someone else'strait, your child could
potentially get sickle cell.
So it was there, right, thispredisposition, 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 ourconsumption of salt is too high,
(36:43):
our consumption of sugar is toohigh, our obesity rate is too
high?
There are certain things thatwe're doing that we probably
could change and if we have moreawareness.
I'm going to speak to the otherelephant in the room when we
talk about ownership, right, wegot to take ownership as a
people for our health, ourpreventative health, you know.
(37:05):
Health and wellness.
Is that what your nonprofit armis doing?
Speaker 2 (37:11):
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 arereally focused on getting the
word out.
So, when it comes to what youjust said people not being aware
(37:31):
that's where glendale researchfoundation comes in, not only
for working with othercommunity-based organizations.
To what you just said, peoplenot being aware that's where
Gwendoly Research Foundationcomes in, not only for working
with other community-basedorganizations you know, such as
churches or othercommunity-based groups.
Think about we were justcontacted this is a really
recent anecdote we were justcontacted by an organization
(37:51):
that is going throughpre-contamination, just testing
their theory on a particularsolution, and they are leading
with the fact they want to makesure their solution works in
underrepresented communities.
So they called us to see whatwas the best way to go about
that and how could we assistthem in getting in those rooms.
(38:11):
Could we assist them in gettingin those rooms?
Because they were self-awareenough to say we wouldn't be
welcome because they'reCaucasian and I appreciate their
candor and there was nopolitical correctness or beating
around the bush.
They want to make sure thatwhat they are creating as it's a
(38:32):
new solution.
They're looking for FDAapproval, looking for the whole
thing.
This is brand new not on themarket, not available and they
are leading with.
How can we get this intoeveryone's hands?
How can we make sure this worksfor everybody?
And also, we know that we don'tknow how to penetrate those
(38:52):
spaces.
Can you help?
That is a perfect example ofwhat our nonprofit arm does,
right, because frenetic is goingto be focused on.
Well, we can help you with yourclinical trial, right, but
Winona Lake Research Foundationis going to be focused on.
Have you tested this ondifferent communities, like deaf
and hard of hearing?
Have you tested this oncommunities that are maybe
(39:12):
suffering from rheumatoidarthritis?
Do they have the dexterity touse your solution?
Right, and just really thinkingoutside of the box?
And then we start getting into.
Think about what I just saiddeaf and hard of hearing,
rheumatoid arthritis, especiallyearly onset arthritis.
Adding to that equationmelanation Are you black and
brown, plus some of these otherconditions?
(39:34):
So now you're adding in evenmore barriers and sometimes even
more inequitable access to thatcare.
So that let them know.
Are you thinking about how thisis going to be insured?
This has to be covered by CMS.
This can't be only private payor for people that can afford
out of pocket Right, and so youstart unpacking these
conversations in a way that ournonprofit can do that our for
(39:59):
profit can just naturally.
Let me know if that answersyour question.
Speaker 1 (40:02):
No, it certainly does , Damon.
You got any addition?
Speaker 3 (40:09):
not really.
Um, when we look at the, whenwe look at the how this breaks
down, she brings up a fantasticpoint saying these organizations
can, can come to us and wewelcome, we want them to.
I think one of the bigchallenges that we have in our
community is we circled thewagons.
(40:29):
We had some things go onhistorically and everybody
points to Tuskegee and they go,wow, that was it.
No, there's been a whole lotmore that's gone on, and not
just the African-Americancommunity, also the Hispanic and
Latinx community, theindigenous populations circled
the wagons.
So, okay, no, no, no.
We don't trust you as anorganization.
(40:50):
We don't trust that you'll useour data correctly.
We don't trust that you haveour best intentions at heart and
, as both organizations, we wantyou to come to us.
We want to have thatconversation.
We want you to believe in ourcommunity enough to take that
(41:12):
time and that consideration andwe want to help.
And that's part of the reasonwhy, when we look at
universities, we want to workwith universities to develop the
next generation of researchers,of clinicians, of community
outreach experts, of people whocare and give a toot about
(41:32):
health care and health outcomes.
We want people, invite people,beg people to come and speak
with us so that you can learnsome of the statistics that
we've pulled together around thedisparities in gender and
persons who are differentlyabled.
It's a fascinating, fascinatingstatistics show.
(41:53):
We almost expect that in theinner cities, the inner cities,
there are going to be healthdisparities.
We know that.
But the numbers are very eerilysimilar to the same disparities
in rural areas, to the samedisparities in rural areas, and
we know that the populations arevery different.
So come to us and allow us towork together with you.
(42:18):
We are not just trying to saveminorities, we want to save
marginalized communities andsadly that's also women, that's
veterans.
Those are the people who livenext door to us, who live in our
house, who are our sons anddaughters.
Come to us and have theseconversations, ask these
(42:39):
questions.
We're happy to answer them.
Speaker 1 (43:04):
Yes, I'm glad you brought all this voices and I
hear this historical context andthey were saying certain things
that you're saying.
Like you know, there's just adisproportionate amount of
people being affected by certainthings that aren't with others,
but then we have this hugepopulation 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 andthe why always comes down to
(43:27):
well, you treated these peoplepoorly.
Let's just call it when youtreat this population poorly,
and your answer to that was nota very good apology.
I just I mean, I was veryhonest, as you know.
Did you ever apologize tospecifically Black people?
(43:49):
Hey, you know what?
I'm sorry that I experimentedon you without your will and
caused great pain.
I'm sorry.
I'm sorry that I caused greatpain in cervical cancer when I
you know, illeg Minnesota wasfounded on 38 Native Americans
that were hanged and then theirbodies exhumed without the
(44:17):
tribal knowledge.
I'm sorry I did not hear that,or I didn't hear it loud enough
to where it made a difference inthose populations, because it's
not so much.
You said you were sorry, butdid you take any action behind
it?
What did you do?
Or you just left it the way itis, and then, if you leave it
(44:37):
the way it is, you're going tokeep getting the same result.
So I applaud what you both aredoing.
Before I let you go, you've gotto 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 yourorganization?
Speaker 2 (44:58):
You can donate to Gwendoly Research Foundation.
It's a tax-deductible donationbecause it is a 501c3
organization, so your donationsare all tax-deductible.
We have a couple tiers forcorporate donations,
particularly corporate donationsfor ACRP.
We can provide a link to that.
Our donation page is on ourwebsite, which is gwenlilyorg
(45:20):
Lily, with one L and Grant,you'll be able to put this in
text.
Okay, then we have individualdonations as well.
We'll have a link to that, andthen just general corporate
sponsorships, because, again, wedo want to work with
organizations that have acommitment to moving this
(45:41):
forward, and there will be alink to that.
Speaker 3 (45:44):
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 towork with you.
We'd love to be theorganization to provide your
testing for you, be it basicclinical diagnostics or next
generation sequencing.
We're developing mobilelaboratories where we can
(46:08):
partner with you, if you're aprovider, if you're a university
, to go out into your communityand provide these tests on site
in the community.
So you don't have to get peopleto come in, we'll go to them
and we'll do it right there andin under an hour we can tell you
oh OK, hey, wait a minute,let's have some conversations,
(46:29):
let's talk about some things.
So that's how you can worktogether with frenetic as well.
Speaker 1 (46:34):
Awesome.
This has been a fantastic,fantastic episode.
I want to encourage both ofyours entire audience to tune in
to all the episodes of followthe brand at five star medium,
that is the number five.
A star, that's B for brand, dfor development informastercom.
Before I let you leave, you'regoing to tell us I know you said
it was during the Jazz Fest,but what is the exact date for
(46:56):
the ACRP?
Speaker 2 (46:58):
April 24th through 27th 2025 in New Orleans.
The conference will be held atthe Hyatt Regency, new Orleans
and we will be spot and center.
We cannot wait for this.
Speaker 1 (47:14):
All right, all right, I love it.
Thank you again for being onthe show.
Take care, and we will see yousoon hopefully sooner than you
think in New Orleans.
Speaker 2 (47:22):
Yes.
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 getclose to the 200th show on
Follow the Brand.
I couldn't think of a betterway to really get to this
milestone without.
We've got Dr Tanya, we've gotDamon House here and we're going
(00:27):
to have a real discussion.
It's not just about technology.
Last time we were here, we weretalking about cybersecurity.
We were talking about thingsthat are going on in the
emerging technology space.
With Damon House, today, we'regoing to talk about some things
that are very, very importantfor a lot of people and
(00:49):
especially underrepresentedcommunities that we all
represent.
We're talking about awarenessto action, advancing health
equity and precision medicinetoday, and we're going to talk
about some how do we take actionaround some things that are
very, very important.
So we're talking health equity,precision medicine and the
(01:10):
urgent need for action.
So I want to introduce you now.
First we'll go to Dr Tanya andthen, right after she finishes
up, let's go over to David Howes, get us introduced and let's
talk about this importantsubject.
Speaker 2 (01:24):
Okay, well, I will not get on a soapbox so early.
My name is Dr Tanya MarieMartine Mercado, dr Tanya for
short.
I am the CEO of Phrenetic.
Phrenetic is a biomedicalresearch organization that is
dedicated to bringing precisionmedicine to research and
healthcare.
The reason why this isimportant is the life cycle of
(01:45):
how you get yourover-the-counter medication has
an entire back office cycle,starting with research and
ending with patients.
We, as patients, get thosedrugs after research has
occurred, it's been releasedinto the commercial space and
(02:07):
then approved by your doctor, bythe FDA, and then prescribed by
your physician.
So that's the life cycle ofmedication, of treatment, of
care Starts with research, endswith healthcare execution.
And what we're going to addresstoday is how Black Brown, other
underrepresented communitiesare not involved in that cycle
(02:30):
and are being woefully left outon a consistent basis, meaning
that treatments, medication andso on and so forth is not
tailored to us.
Speaker 1 (02:42):
Interesting.
Speaker 3 (02:42):
All right, damon, let's hear from you Not much
left to be said but hello, myname is Damon House.
I have the joy of working withthis woman every single day to
hear this brilliance and much,much more.
But yes, as she's talking aboutit, when we talk about the
efficacy of how drugs aredeveloped, when you go to a
(03:05):
store and you say I'd likeTylenol or I'd like a
prescription from your CVS, yourdoctor has written you a
prescription that's tested forthe everyone, not you as the
only one, and so one of thethings that we want to do is we
want to definitely take a lookand peel that back to understand
what those differences looklike.
Were those medicines, thosedrugs, were those treatments
(03:27):
tested on people like you?
Were they tested in your agerange, your gender range?
Oftentimes, women don't get asmuch love in the clinical trials
as men do.
We can talk about things likeBMI and the stigmas that are
associated with models that havebeen developed around
(03:49):
Eurocentric males, but that hasfollowed us down into some of
the processes and procedures inhealthcare electronic health
records, prescriptions,treatment plans, even things
that they do in criticalemergency situations and so we
want to have this conversationto talk about the disparities in
(04:12):
marginalized communities, underunserved, underrepresented
communities that don't activelyparticipate in the health care
system, and when we don'tparticipate, it's harder for the
system to support us becausewe'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
(04:36):
might pull out one or two, mightget up on it and we might give
our own sermon today.
Speaker 1 (04:40):
Well, this is important.
We've got to have these kind ofdiscussions because they're not
readily had and we need toinform the public.
This is why we have an open mic, an open forum.
Now you both are part of whatwe know as GLRF, which is the
Gwen Lilly Research Foundation,which you started with the
(05:01):
frenetic.
And then you know, damon,you're the chief growth officer
there.
But you both are going to be atthe upcoming conference for the
ACRP, now that's theAssociation of Clinical Research
Professionals.
Talk to us about, first of all,why you started this
organization and what is yourintent at the ACRP.
Speaker 2 (05:27):
I'll go ahead and take that one.
So I started Gwendoly ResearchFoundation, which is named after
my mother and her favoriteflower.
I started that organization asa non-profit to really focus
where our for-profit could not.
So Gwendoly Research Foundationis the nonprofit, philanthropic
(05:49):
arm of Phrenetic and it goesdeeper into the community to
provide that education and thatoutreach really focused on the
nuts and the bolts.
When we say translatingresearch into care, that's
actually going out into thecommunity and talking about
research, making it a littleless scary, bringing that
(06:11):
information and havingconversations that you may not
be having with your physician ina very practical way.
So, as Phrenetic is focused onthe science, the genetics and
the genomics and really gettingdeep into the research and
provider side of it, the WilliamLee Research Foundation is
taking that, breaking it downinto actionable chunks.
We're not just providinginformation.
(06:33):
The goal is to give actionaround that.
Ok, so now you know this, whatare we going to do about it?
What can you do in yourcommunity?
What can you do in your family?
What can you do as anindividual?
Right, the Association ofClinical Research Profession
Professional is the premierresearch conference and, as the
executive director and presidentof the Gwendoly Research
(06:53):
Foundation.
Where Frenetic goes, gwendolygoes, and Damon is one of our
board members at the GwendolyResearch Foundation, so he's
Frenetic's chief growth officerwhen he goes, gwendoly Research
Foundation, so he's Frenetic'schief growth officer when he
goes, gwendoly ResearchFoundation goes.
And it gives us this wonderfulopportunity to bring what
Frenetic is doing and breakingit down into the community right
(07:14):
.
So this conference this yearfor ACRP is being held in New
Orleans, which is where I wasborn and where I'm from, so
there's a lot of personalattachment to the location.
But it also gives us a veryunique opportunity to leverage
my friends, my family and makethem more aware Our research,
(07:35):
I'm sorry, our academicinstitutions that we're
partnering with, like Xavier andSouthern.
There we can give them somevisibility into the research and
the health care by actuallybeing out in the community,
which is the point.
It's enough to.
We're trying to move away fromresearch constantly being in
these circles and silos that theaverage person, just the
(07:57):
average individual, isn't awareof.
We're trying to make it morenormal, making that
accountability a normal part ofyour everyday, and the ACRP
conference in New Orleans givesus just a unique opportunity to
do that, not only becauseFrenetic is speaking as an
organization.
We have a booth, we have apresence there as an
(08:18):
organization.
I'm speaking, damon is speakingon a larger stage with Dr
Claude Lewis-Charles fromMicrosoft.
They're sharing a tech expostage and we have a lot of
activities planned just in andaround the community.
We're making sure we're havingdinners that are at restaurants
(08:40):
owned by community individuals,we're taking ourselves out and
we're talking to members of thecommunity and, even more fun,
this is being held during JazzFest, so it gives us a big
opportunity to you know, reallybe authentic in a fun way and
again take some of the stigma,the scariness away from research
(09:01):
and really give people apractical understanding of what
it is.
Speaker 1 (09:05):
David.
Speaker 2 (09:05):
I'd love to hear your perspective on it because, like
I said, I don't want to talkall day, but go ahead.
Speaker 3 (09:10):
Well, Jazz Fest.
I promise we won't do anysinging.
I promise we, we, when we getdown there and I have to say
Dylan and Grambling, because ifI don't, then they're going to
get sore.
I don't need the hate mail.
We want to touch on minorityserving institutions and I'm
sure we'll get into that in thisconversation.
(09:31):
But, getting down, there is anopportunity for us to see our
peers in research.
I guarantee there will be veryfew other organizations that
(09:52):
look like us, that have themessage, the passion, the
mission, the vision, the goalslike us and we did.
She and I did a little bit ofresearch in trying to find
organizations that have labsthat do the type of work that we
do, and out of the 200 andalmost 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,
(10:13):
really quickly.
So this is an opportunity forus to get into these types of
spaces and assert our voice andmake sure that we're not
belligerent, we're not angry,but we are assertive in the
needs for democracy, for thedemocratization of clinical
(10:34):
trials, we are assertive in theneed for addressing the
disparities in communitiesaround health outcomes and we
are assertive in saying thatwe'd love to partner with other
organizations that want to worktogether with us, but we need to
make sure that we're all movingin the same direction Now we've
got some input from both of you, and I always like to jump
(10:58):
right in and talk to theelephant in the room and for me,
to the elephant in the room,and for me, the elephant in the
room is around.
Speaker 1 (11:06):
It's an area of health equity.
But what happens when you, apopulation of people, are not in
the room for research and then,like right now, we have a
measles outbreak that we haven'thad in 25 years?
What happens when a whole groupof people, when they come out
(11:28):
with different medicines andvaccines, are not accounted for?
I want to bring this over to DrTanya.
What are the implications ofthat?
Speaker 2 (11:40):
You have a lot of implicit bias buried deep into
code, and what I mean by that iswhen we look at some of the
tools and most people have beena patient.
You have seen a doctor at somepoint in your life, even just to
go to school in the US, so onand so forth.
These days, very rarely are youseeing doctors and nurses write
(12:04):
things down.
It's a lot of computer-basedinteraction and there's a lot of
automation.
There's a lot of tools in place, not only to help create
measurements and diagnosis anddosages of medication, but even
just simple things like, forexample, the pulse socks, the
little thing on your finger thatdidn't accurately measure
(12:24):
melanated skin.
That's a very real, very recentexample of what that means not
being in the room.
Again, we need to be realisticand remember when some of these
things were created,particularly tools and resources
like a pulse ox or other typesof technology it was based on
(12:47):
Eurocentric, male, eurocentricindividuals, right, right.
So now you fast forward alittle bit and you start
automating that information.
The data hasn't really beenimproved in that.
You can see that you know justresearch any clinical trial and
(13:11):
clinical trials dot gov and lookat their diversity, breakout,
which is required to be reported.
So you can fact check, pleasedo.
Actually, you can fact checkthis information, and so when
you are not included, in thedesign phase of some of this.
So think of research, likeyou're designing a drug, you're
designing a treatment, you'redesigning a novel therapeutic.
If you are not included in theroom, if you're not included in
that data set, then it's not foryou.
It's just that simple.
How can you be included?
(13:32):
And so take the emotion out ofit and just look at it as ones
and zeros.
Be included, and so take theemotion out of it and just look
at it as ones and zeros.
Your ones and zeros weren't inthat data set because you
literally were not there.
You were not represented.
So now fast forward and you havethings like the pulse ox is
just like I said, that's sorecent realizing that melanated
people.
It doesn't capture it the sameway.
And what are they doing?
(13:53):
They're trying to create a newone, but they had to get to the
place where we didn't know thatwas inaccurate, right?
And think of how many othertools.
Think of EGFR, the kidneymeasuring.
Think of vaginal birth aftercesarean, black and brown people
, the measurements.
The mathematical calculationfor black and brown people adds
(14:17):
more data than necessary to makeit inequitable, based on stigma
.
That has long been sincedisproven Right.
And so when you start thinkingabout these things and you start
applying it to again, theeveryday person's health care.
When you go to the doctor andthat doctor or that nurse that
is seeing you is looking ontheir computer, they're not
(14:38):
personalizing that interactionto the point.
Well, I don't like you becauseof your skin colors.
I'm going to do somethingnefarious.
No, this is code you know.
And also get over yourself.
I'm going to be real honestabout that.
This is code.
And take some accountabilityand think about the fact that
you need to be involved in someof these conversations and some
of these clinical trials andsome of these question and
(15:01):
answer sessions.
When your doctor says, or thenurse says, do you have any
questions?
Ask, ask some questions, beinvolved in that conversation,
because it turns into data andthat data needs to be captured
in order for our health care, inorder for our treatment plans
to be more tailored,particularly when it becomes
more and more automated, moreand more artificial intelligence
(15:23):
inserted into these.
We need to be accounted for.
So that that is my soapbox.
Speaker 1 (15:29):
That is not.
That is real talk, is what Icall that.
I want to sing this over toDamon because you know, when I
met Damon he was at Microsoft.
I look at him as somebody youknow, he knows he understands
what's happening from atechnological plane and I
remember meeting him at theNational Association of Health
Service Executives and firstthing we talked about is that.
(15:51):
You know, it just seems to bethat what's happening in digital
technology is highly skewedjust to the same point you just
said.
Now here's the question I havewhat is the accountability?
If you understand, you're atechnologist, you're creating a
product, let's say, a device,just like Dr Tanya just talked
(16:12):
about.
Who's accountable?
You know what?
We really didn't test this in acertain geography.
We didn't take really maybeit's not for everybody, it's for
certain people.
I mean, who does that?
Speaker 3 (16:25):
Well, everybody, unfortunately.
I mean, it really is thatwidespread.
And, just as a side note, DrTanya and I have published an
article on the implicit bias inartificial intelligence.
So when we talk about explicit,implicit, explicit bias, I
don't like you because you arefeeling whatever mic that is.
(16:45):
That's your explicit bias.
You're too black, you're toowhite, 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, andso it's softer, and it's really
not as harsh and abrasiveassertive the word I used
(17:08):
earlier it's not as assertive.
So really, when we look atimplicit bias, okay, yeah,
you're a good enough person, butbecause you're African American
, well then I need to add acoefficient of X or decrease a
coefficient of X to whatever Iput onto your chart, and so
that's the start of it.
Dr Tanya said, when you wantthat accountability, and you
want it at the start, when youcreate these, when you design
(17:31):
them, but then you need themlater on in the testing and in
that testing and when you do inthe market, yes, you need to go
to different folks in the marketand test it on them, but you
also need diversity in the teamthat's designing and doing the
tests, so you can have skewedtests.
We found out years after thefact that SATs were slightly
(17:55):
skewed Go figure, years afterthe fact that SATs were slightly
skewed, go figure.
So when you say that how is itpossible for these major
healthcare manufacturers todesign this equipment and have
the bias built in, they're bas,a major hospital facility, and
(18:16):
the hospital says, well, I needmy data to look this way, and
they go.
But we've looked at it and thisis a bias-free way and they
don't mesh, they don't get thesale.
So they match up with thehealth record, the systems, the
processes, what is already inplace.
I'm not going to say this toallay blame, but when you look
(18:39):
at a Cerner, when you look at anEpic, those are two
organizations that basicallydrive the electronic health
record industry in the world.
So if the biases are implicitand baked into what they're
doing, any organization thatthen tailors itself to support
those electronic health recordsnow has carried forward that
(19:02):
bias.
And so it is subtle and softand, under the covers, dangerous
, because everybody says, well,no, I'm sure it's okay, I'm sure
somebody's checked it out, andso they don't.
And when you don't do that, youallow that bias to continue to
manifest itself.
Speaker 1 (19:22):
Man, wow, we need to get a handle on this.
What you said there is likewe're we're continuing the same
problem that we had even beforewe had said technologies.
It's the human bias that hasbeen and unfortunately, we have
to go back to America's roots.
Let's just say that becausethey were separate and unequal
(19:49):
and even though you had laws inthe books in the 60s, certain
attitudes still prevailed, andthis is a case in point, and
this had not for healthcare, butit was in law.
It happened in Alabama when theywere trying to implement when
they actually implemented an AIsystem.
And what they did?
(20:10):
They started pulling data fromall the court records over,
let's say, a 30 or 40 yearperiod of time and started using
it against court cases.
Well, when an African-Americanmale came up before the court
and the recommendations forsentencing or whatever it may be
came out of the AI, you got toremember in Alabama, in the you
(20:36):
know 60s, 70s, even before, evenafter, highly biased or you
know African-American males.
So when it came to any kind ofjudgment that came out, it was
harsher and they began to lookat this like, wow, this person
over here got let's just say itwas two years for a similar
crime.
This this person over here got20 years.
(20:58):
Why is the machine recommendingthat We've got to be very
careful about what we're doing?
Maybe it wasn't intended thatway, but there are consequences
that take place, and so now I'mgoing to bring it back to you.
(21:25):
Know, we just talked a littlebit about health equity.
Now we start getting intoprecision medicine.
We're trying to come there.
Do you feel the fabric ofprecision medicine could be a
way to get us to a higher levelof an unbiased look at these?
Speaker 3 (21:34):
kinds of data.
Let me take this one first.
So you talked about it from alegal perspective and I'm
actually very familiar with howthey're doing that.
Other states are trying topursue similar guidelines.
Let's go back to health.
Body Mass Index was designed bya European scientist when he
wanted to design what the idealman is, and so he looked around
(21:58):
him and found European menaround him, not even women, and
BMI was then based on hisstudies back then of not
studying women but only studyingwhite men.
And it then kind of came down tothe point now where it is such
an intrinsic part of healthdiagnoses today that it's just
(22:23):
people know what BMI is, but itnever accounted for the higher
amount of muscle mass thatAfrican Americans have and are
still healthy, or the lowerlevels of muscle mass that Asian
Americans may have over theirEurocentric counterparts, and
(22:44):
their numbers are often skewed.
And now that gets baked intothese systems.
So when you start to say how canprecision medicine uncover what
this looks like, we have tostart tearing away those
fundamentals of our healthcaresystem and really identifying
(23:06):
who are you as an individual andwhat does healthy look like for
you as an individual notcomparing you to a standard,
because a lot of those standardswere developed back in the 40s
and 50s, where they didn't haveenough data on Hispanics, asian
Americans, african Americans orBlack Americans, and so they
(23:28):
made assumptions, and thoseassumptions still exist today as
standards.
What precision medicine does isit puts those to the side and
says, okay, who are you, andtake some more comprehensive
view of you as an individual andthen starts to tailor how we
(23:48):
can treat you.
Now Dr Tanya will go into thegenetics and the genomics and
the pharmacogenomics and theepigenetics and the other stuff,
words that it took me a reallylong time to learn because
they're another language.
But and I want to come back tothis later on sometimes your own
doctor may not know, and that'scritically important too.
Speaker 1 (24:09):
I want to hear from Dr Tanya.
Speaker 2 (24:12):
So, damon, hit the nail on the head and I'm going
to address your question.
Precision medicine has anopportunity to compare you to
yourself and just inherentlysaying that you can see how that
might adjust the standard,because now the standard is you
(24:35):
right.
And so it's not necessarilyreinventing all of that code
because no hospital orhealthcare system I mean, let's
just be very honest the cost ofrecode at that scale is massive
and no one wants to take it on,especially in our system where
providers, nurses, are woefullyunderstaffed.
(24:56):
It's a nationwide fact.
So let's not try to boil theocean there.
But precision medicine has anopportunity to narrow that focus
a little bit.
Take into accountability I'mgoing to say it not only your
genetics but your genomics.
So if you live, for example,genomics is not only your genes
(25:19):
but other influences like yourenvironment, like your diet,
like your lifestyle.
You can.
And when Damon mentionedepigenetics, that is where your
particular genetic makeup isadjusted based on you how you're
(25:40):
eating, your alcoholconsumption is a very real one,
what can be passed down overgeneration, so on and so forth,
and that can slightly tailor.
Really pollutant environmentscan 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 westart looking at precision
(26:03):
medicine and we start taking ina holistic view of an individual
versus some sort of bestpractice from the 1950s, you can
see how precision medicine hasan opportunity to really tailor
a treatment or a care plan notonly to you as an individual,
but the population that you maybe a part of.
(26:24):
And now we start getting into,like I said, not boiling the
ocean, but we can actually startto have drug dosages tailored
to how much you weigh.
Have you ever seen a reallyfrail person, who's maybe
elderly, get the same dosage ofa medication of someone that's
like 20 years old and twicetheir size?
(26:44):
Again, that's automated.
It's not on purpose, but thisis the kind of thing that
happens.
And so tail start demandingcare at home because you can.
(27:18):
These days people don't want togo to the doctor just for
something simple if they canavoid it.
I am being a little elitistwhen I say that, because there's
an entire separate section ofthe population where that is the
only option that they have dueto infrastructure issues where
they live, so on and so forth.
So think bandwidth.
However, take that out of thepicture and you start thinking
(27:43):
about the capability of beingtreated at home.
The possibilities are endless.
It's a green playing fieldGrant.
It's a green playing fieldgrant.
It's a green playing field.
It's this is importantinformation.
Speaker 1 (27:57):
You both have given great information and great
information to the audienceabout the why and the what.
We still want more informationabout frenetic.
What is it that you are doing?
How are you making a differencein this incredible world that
(28:20):
we have of healthcare andhealthcare delivery and research
?
Talk to us more about that.
Speaker 3 (28:29):
I'll let you start and then I'll Okay.
Speaker 2 (28:32):
Okay, I sometimes say Damon is my interpreter, so I
don't say that sometimes Iactually say that quite a bit.
So you've heard me say you knowfrenetic is really applying
precision medicine to researchand healthcare.
But how we do that isintentional.
So if you are familiar withthis particular industry, you'll
(28:56):
recognize some of ourcapabilities like having
clinical genomics, a toxicologylab, clinical research, the
ability to conduct clinicalresearch, the ability to have
data, high performance computingwith that research data.
What that is is often done inacademia.
So think John Hopkins, rutgersColumbia.
(29:19):
What we do is largely containedin academia and we are bringing
that out of that particularsilo.
There's nothing wrong with that.
But again, our mission is totake these capabilities and
bring them to all people rightand remove some of those silos.
So that's our how and we had tolook at where is the gap.
(29:43):
You know, I've heard you say inthe 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 lifecycle starts with the sample
collection, to be perfectlyfrank.
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
(30:07):
software, into our data lakeright, which is called
iConcordia that's our softwaresolution data lake right, which
is called iConcordia that's oursoftware solution and we control
that and then being able to dosomething with that sample so we
can sequence it.
We have our own lab.
We will sequence that data tothe depth and the capacity of
(30:27):
the request.
You know, everybody doesn't needto do a whole genome sequence,
right?
Sometimes you're just trying tofind a biomarker, or you're
just trying to find if you'repredispositioned to a particular
condition, right?
So all testing is not the same,but the point is we have the
capability to do that and thenagain take that information,
(30:49):
import it into your medicalrecord, give you that detailed
report that goes beyond a yes,no type of report, really get
down and explain what those testresults mean and then, on the
research side, being able totalk with our sponsors.
So a sponsor is any third partythat's paying for research.
So think about the FDA, thinkabout Pfizer, you know all of
(31:11):
these other organizations.
Those are sponsors.
So the sponsor they have theirown goals and when they come to
a company like Phrenetic,they're looking for us to give
them diverse data sets.
How can we go out to ourpatients, how can we make
whatever they are trying toproduce?
So think, a new drug, newtherapeutic, new something,
something novel.
(31:32):
Right, we want to actually beable to communicate that to
those physicians, to communicatethat to those patients and
again, take it out of thesuburbs, take it out of academic
communities.
That's frenetic and I know I'mgiving like a 10,000 overview
and Damon hasn't given me thestop talking.
Speaker 1 (31:49):
We need that 10,000.
But I think we get the generalidea.
Sure, so, damon, give us yourpiece.
Speaker 3 (31:59):
So, as a growth officer for Fernetic, it's my
job to figure out how totranslate that genius into
market readiness.
And so what I try the way thatI try and envision it and
approach it is how can I bringthat set of capabilities to
(32:19):
hospitals, private practices,universities, institutions and
others to show them how thesecapabilities can support them in
what they do, can support themin what they do?
So, if you think about atypical hospital, they may be
(32:42):
using, say, genetic and genomictesting, but they may not.
The penetration is really onlyabout 60%.
When we get to FQHCs.
It drops down to 50% forgenetic, but genomic drops down
to about 30%.
So they don't have these toolsin their tool belt to help the
patient who walks in the door tounderstand what may be wrong.
The good thing about geneticsand genomics is it can help to
(33:07):
identify what you may have astrong predisposition for.
So if you got diabetes, you gotit 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, yourbrother?
They can get tested.
Cancer same thing.
(33:28):
They can get tested and theycan identify if they have a
predisposition for that chronicillness.
Well, if we're not using thatas a tool in the tool belt,
we're waiting for people to getsick, and when they get sick we
diagnose them, we treat them andthe costs are higher.
But if we can proactivelymanage that wellness, we now
(33:52):
have the opportunity to say, ah,hold up.
If you eat better, exercisemore, do X, y and Z, you can
kind of put that off for maybeanother five, 10 years or maybe
indefinitely.
That begins to save an FQHCabout $5,000 a year per patient,
(34:12):
and so we want to increase theopportunities for that
engagement.
We also want to go touniversities and we're looking
at the opportunities of going toa university and building a lab
in partnership with them sothat they can do the research
(34:32):
and where we can own and operateit.
But they can get the benefitsof having that laboratory right
there as they go for higherresearch status, et cetera.
A nonprofit who's doing the workin the community may not
necessarily necessarilyunderstand how genetics and
genomics really can change aperson's outlook when you factor
(34:58):
in, say, the socialdeterminants of health.
So now we can educate them onhow they can go to their
churches, their synagogues,their mosques in their community
and tell people what isavailable.
So when they go to the doctorand the doctor goes, you know,
they say, well, I don't feelgood.
And the doctor goes well, no,everything looks fine, I'd like
to get a test.
(35:19):
And they have that right andit's covered by insurance.
Those are the kinds ofconversations where we come in.
We want to have thoseconversations, we want to foster
them, we want to support them.
Speaker 1 (35:32):
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 weretalking about.
You know fairly qualifiedhealth centers.
Most of those are people thatare being treated, are people of
color, black and brown people.
So, wow, 30%, 70%, that's ahuge amount of people that
(35:56):
aren't being treated in thatfashion.
Lots of room for expansion inthat area.
I remember and this is back inthe 70s, I'll date myself that
me and my brother got testedjust for these sickle cell
traits.
So, thanks, right, you gottested.
Oh, tested, just for the sicklecell trait.
So you got tested, oh, do youhave the sickle cell trait or
(36:19):
not?
Then you kind of knew like, allright, you might have a trait,
but if you get to someone else'strait, your child could
potentially get sickle cell.
So it was there, right, thispredisposition, 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 ourconsumption of salt is too high,
(36:43):
our consumption of sugar is toohigh, our obesity rate is too
high?
There are certain things thatwe're doing that we probably
could change and if we have moreawareness.
I'm going to speak to the otherelephant in the room when we
talk about ownership, right, wegot to take ownership as a
people for our health, ourpreventative health, you know.
(37:05):
Health and wellness.
Is that what your nonprofit armis doing?
Speaker 2 (37:11):
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 arereally focused on getting the
word out.
So, when it comes to what youjust said people not being aware
(37:31):
that's where glendale researchfoundation comes in, not only
for working with othercommunity-based organizations.
To what you just said, peoplenot being aware that's where
Gwendoly Research Foundationcomes in, not only for working
with other community-basedorganizations you know, such as
churches or othercommunity-based groups.
Think about we were justcontacted this is a really
recent anecdote we were justcontacted by an organization
(37:51):
that is going throughpre-contamination, just testing
their theory on a particularsolution, and they are leading
with the fact they want to makesure their solution works in
underrepresented communities.
So they called us to see whatwas the best way to go about
that and how could we assistthem in getting in those rooms.
(38:11):
Could we assist them in gettingin those rooms?
Because they were self-awareenough to say we wouldn't be
welcome because they'reCaucasian and I appreciate their
candor and there was nopolitical correctness or beating
around the bush.
They want to make sure thatwhat they are creating as it's a
(38:32):
new solution.
They're looking for FDAapproval, looking for the whole
thing.
This is brand new not on themarket, not available and they
are leading with.
How can we get this intoeveryone's hands?
How can we make sure this worksfor everybody?
And also, we know that we don'tknow how to penetrate those
(38:52):
spaces.
Can you help?
That is a perfect example ofwhat our nonprofit arm does,
right, because frenetic is goingto be focused on.
Well, we can help you with yourclinical trial, right, but
Winona Lake Research Foundationis going to be focused on.
Have you tested this ondifferent communities, like deaf
and hard of hearing?
Have you tested this oncommunities that are maybe
(39:12):
suffering from rheumatoidarthritis?
Do they have the dexterity touse your solution?
Right, and just really thinkingoutside of the box?
And then we start getting into.
Think about what I just saiddeaf and hard of hearing,
rheumatoid arthritis, especiallyearly onset arthritis.
Adding to that equationmelanation Are you black and
brown, plus some of these otherconditions?
(39:34):
So now you're adding in evenmore barriers and sometimes even
more inequitable access to thatcare.
So that let them know.
Are you thinking about how thisis going to be insured?
This has to be covered by CMS.
This can't be only private payor for people that can afford
out of pocket Right, and so youstart unpacking these
conversations in a way that ournonprofit can do that our for
(39:59):
profit can just naturally.
Let me know if that answersyour question.
Speaker 1 (40:02):
No, it certainly does , Damon.
You got any addition?
Speaker 3 (40:09):
not really.
Um, when we look at the, whenwe look at the how this breaks
down, she brings up a fantasticpoint saying these organizations
can, can come to us and wewelcome, we want them to.
I think one of the bigchallenges that we have in our
community is we circled thewagons.
(40:29):
We had some things go onhistorically and everybody
points to Tuskegee and they go,wow, that was it.
No, there's been a whole lotmore that's gone on, and not
just the African-Americancommunity, also the Hispanic and
Latinx community, theindigenous populations circled
the wagons.
So, okay, no, no, no.
We don't trust you as anorganization.
(40:50):
We don't trust that you'll useour data correctly.
We don't trust that you haveour best intentions at heart and
, as both organizations, we wantyou to come to us.
We want to have thatconversation.
We want you to believe in ourcommunity enough to take that
(41:12):
time and that consideration andwe want to help.
And that's part of the reasonwhy, when we look at
universities, we want to workwith universities to develop the
next generation of researchers,of clinicians, of community
outreach experts, of people whocare and give a toot about
(41:32):
health care and health outcomes.
We want people, invite people,beg people to come and speak
with us so that you can learnsome of the statistics that
we've pulled together around thedisparities in gender and
persons who are differentlyabled.
It's a fascinating, fascinatingstatistics show.
(41:53):
We almost expect that in theinner cities, the inner cities,
there are going to be healthdisparities.
We know that.
But the numbers are very eerilysimilar to the same disparities
in rural areas, to the samedisparities in rural areas, and
we know that the populations arevery different.
So come to us and allow us towork together with you.
(42:18):
We are not just trying to saveminorities, we want to save
marginalized communities andsadly that's also women, that's
veterans.
Those are the people who livenext door to us, who live in our
house, who are our sons anddaughters.
Come to us and have theseconversations, ask these
(42:39):
questions.
We're happy to answer them.
Speaker 1 (43:04):
Yes, I'm glad you brought all this voices and I
hear this historical context andthey were saying certain things
that you're saying.
Like you know, there's just adisproportionate amount of
people being affected by certainthings that aren't with others,
but then we have this hugepopulation 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 andthe why always comes down to
(43:27):
well, you treated these peoplepoorly.
Let's just call it when youtreat this population poorly,
and your answer to that was nota very good apology.
I just I mean, I was veryhonest, as you know.
Did you ever apologize tospecifically Black people?
(43:49):
Hey, you know what?
I'm sorry that I experimentedon you without your will and
caused great pain.
I'm sorry.
I'm sorry that I caused greatpain in cervical cancer when I
you know, illeg Minnesota wasfounded on 38 Native Americans
that were hanged and then theirbodies exhumed without the
(44:17):
tribal knowledge.
I'm sorry I did not hear that,or I didn't hear it loud enough
to where it made a difference inthose populations, because it's
not so much.
You said you were sorry, butdid you take any action behind
it?
What did you do?
Or you just left it the way itis, and then, if you leave it
(44:37):
the way it is, you're going tokeep getting the same result.
So I applaud what you both aredoing.
Before I let you go, you've gotto 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 yourorganization?
Speaker 2 (44:58):
You can donate to Gwendoly Research Foundation.
It's a tax-deductible donationbecause it is a 501c3
organization, so your donationsare all tax-deductible.
We have a couple tiers forcorporate donations,
particularly corporate donationsfor ACRP.
We can provide a link to that.
Our donation page is on ourwebsite, which is gwenlilyorg
(45:20):
Lily, with one L and Grant,you'll be able to put this in
text.
Okay, then we have individualdonations as well.
We'll have a link to that, andthen just general corporate
sponsorships, because, again, wedo want to work with
organizations that have acommitment to moving this
(45:41):
forward, and there will be alink to that.
Speaker 3 (45:44):
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 towork with you.
We'd love to be theorganization to provide your
testing for you, be it basicclinical diagnostics or next
generation sequencing.
We're developing mobilelaboratories where we can
(46:08):
partner with you, if you're aprovider, if you're a university
, to go out into your communityand provide these tests on site
in the community.
So you don't have to get peopleto come in, we'll go to them
and we'll do it right there andin under an hour we can tell you
oh OK, hey, wait a minute,let's have some conversations,
(46:29):
let's talk about some things.
So that's how you can worktogether with frenetic as well.
Speaker 1 (46:34):
Awesome.
This has been a fantastic,fantastic episode.
I want to encourage both ofyours entire audience to tune in
to all the episodes of followthe brand at five star medium,
that is the number five.
A star, that's B for brand, dfor development informastercom.
Before I let you leave, you'regoing to tell us I know you said
it was during the Jazz Fest,but what is the exact date for
(46:56):
the ACRP?
Speaker 2 (46:58):
April 24th through 27th 2025 in New Orleans.
The conference will be held atthe Hyatt Regency, new Orleans
and we will be spot and center.
We cannot wait for this.
Speaker 1 (47:14):
All right, all right, I love it.
Thank you again for being onthe show.
Take care, and we will see yousoon hopefully sooner than you
think in New Orleans.
Speaker 2 (47:22):
Yes.
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