September 11, 2024 • 51 mins
In this special live episode of Stop & Talk, Dr. Sindy Escobar Alvarez, Program Director for Medical Research at the Doris Duke Foundation, joins host Grant Oliphant. This interview was recorded at a community forum hosted by the Prebys Foundation that explored the evolving landscape of medical research funding and its impact on community health. They discuss the many important issues facing the field, including equity in research, the role of philanthropy in driving innovation, and many others.
Additionally, community members were invited to ask questions, illuminating some of the factors that drive San Diego County’s health clinicians and medical researchers.
Listen in to hear how philanthropy can help create better science, elevate important but traditionally undervalued areas of research, and change our focus from sick care to healthy care. You can read more about the event and watch the full video of this episode here.
Credits:
This is a production of the Prebys Foundation.
Hosted by Grant Oliphant
Co-produced by Crystal Page and Adam Greenfield
Engineered by Adam Greenfield
Production Assistance by Tess Karesky
Video Production by Edgar Ontiveros Medina
Recorded at the Salk Institute
Special Thanks to the Science Philanthropy Alliance
The Stop & Talk Theme song was created by San Diego’s own Mr. Lyrical Groove.
Download episodes at your favorite podcatcher or visit us at StopAndTalkPodcast.org
If you like this show, and we hope you do, the best way to support this show is to share, subscribe, and review our podcast. Thank you for your support, ideas, and listening.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Emily Young (00:12):
Okay. Well, I just wanted to turn to the last
portion that we have beforelunch. I'm just super excited to
introduce our wonderfulpresident and CEO of the Conrad
Prebys Foundation, GrantOliphant, who has a long and
storied history in philanthropy.
Grant Oliphant (00:28):
Which we won't go into.
Emily Young (00:31):
But we're also really lucky we did recruit him
to San Diego, and it's becauseof his leadership that we're all
here today. And also oh, ofcourse, now I just lost- here it
is. I also wanted to introduceto you Sindy Escobar Alvarez,
who is the program director formedical research at the Doris
Duke Charitable Foundationexcuse me, Doris Duke
(00:54):
Foundation. And, they're goingto have a conversation, and we
brought, Sindy Escobar Alvarezto, to San Diego because, she is
in charge of, the medicalresearch program at Doris Duke.
And for those of you who havenot heard of Doris Duke, maybe
(01:14):
there are a few of you, maybe.
But for the rest of us, we knowthat they're a hugely impactful
foundation that have beenleading the field for decades.
And we're certainly looking tothem for what we can learn from
them in the work that we'restarting in San Diego. So I'll
turn it over to you.
Grant Oliphant (01:34):
Hello, everyone. It is a delight for us to be
here with you, and I just wannathank Sindy for, taking the time
to come out from New York and bewith us to have this
conversation. I think we'realready learning a lot just from
what we heard this morning.Sindy, you're a fascinating
(01:55):
person
Sindy Escobar Alvarez (01:56):
Thanks.
Grant Oliphant (01:57):
Because you you're you're leading a program
area where you've done deepscientific work. And in talking
with me just a moment ago, youdescribed how you are you think
as a scientist. And I thinkthat's where I wanna start. How
has being a scientist affectedyour thinking about the role of
philanthropy? Before we get intoany of the work and what you're
(02:19):
doing, let's talk about how yougot there.
Sindy Escobar Alvarez (02:22):
You know, thanks for for that question
because I think it so, shapes,many of the the ways in which I
have gone about my work, butalso in which I've followed and
what others have built beforeme. And I think information
helps us, even incompleteinformation, helps us move
forward and identify where toput our energies. Right? And so,
(02:46):
that is how it has affected. Youknow, I see the world through
questions.
Everything to me is a questionfor better or worse because we
don't always have an answer. Butwe always as a scientist, I can
always think of, well, what dowe need to know to make a next
step or to decide whichdirection do we go in, you know,
especially, when there are somany societal problems and in
(03:08):
medical research in particularlywhere there are much larger,
sources of funding. Right? Andso as a philanthropy, we try to
find what is our place, what isit that we can do here. So I
think, knowing how to approach,what questions to approach and
what information to gather andhow do you parse out, you know,
how do you how do I decide howmuch time do we as a team put
(03:30):
into into answering a questionor not to to find a way forward?
I think it's very that's how Ithink of of my role as a
scientist, you know, in terms ofquestions. Right.
Grant Oliphant (03:40):
So let's let's turn for a moment to the work,
and and then we'll come back tothe convergence of those worlds
in a moment. But I wannaacknowledge that in 2023, the
FDA approved the first CRISPRbased cure, for sickle cell, a
disease that had been understoodsince the fifties, Nineteen
(04:03):
fifties for anybody who'swondering. And in a way
illustrated some of thechallenges that the medical
research community continues toface in terms of equity and
access issues. So I'm I'm justbefore we get into that, I'm
just curious to hear you talkabout your foundation's role in
(04:24):
in bringing that breakthroughabout.
Sindy Escobar Alvarez (04:26):
Right. Right. And that's that's an
example where there are so manyissues at play. Right? There are
many inequities, and I think,talk to talk about data and
connecting with the communitiesthat drive the work.
Right? So I think at the time,if many of you may know that, in
general for developing a newdrug, you know, it's not only a
(04:50):
time consuming process, but it'sa very expensive process. And so
at the time, we really and thiswas before my time there. I
actually managed a lot of thework that we supported, but the
the actual position ofsupporting this field preceded
me. But we we thought hard aboutcan we as a as a relatively
small foundation and player inmedical research have a
(05:14):
transformative role in in adisease that doesn't have any
didn't have doesn't have anycures at the time with bone
marrow transplant is still, youknow, it was the only option if
you had a match.
And, through talking to thecommunity, through understanding
technology, I think at the timewas a big, you know, a big
factor where we saw thattechnologies that were being
(05:35):
applied to cancer research thatwere helping us understand,
genetics better were not beingapplied, to this field that was
neglected. And so we did, see anopportunity to play a role in
bringing the community to afield that needed that insight.
Right? And to to work with thosethat have been in the space for
(05:56):
a long time to guide, well, whatare the important research
questions here? And we we weapproached this is a with a very
broad, lens.
You know, we said, what are thequestions we need to learn more
about in sickle cell disease?And we supported all kinds of
projects anywhere from genetherapies, you know, and at the
time they were nascent. Right?Like, how do we, get they had
(06:17):
been gene based, gene modifyingapproaches, such as with viruses
and things like that, but CRISPRwasn't there yet. Right?
And so, the but scientists werealready going in that direction.
And then we also supportedprojects that we're trying to
understand how do we preventdamage, cognitive damage from
stroke and sickle cell disease?And so having that, you know,
(06:38):
similar to this room, havingthat, mixture of of different
fields and and ways of viewingthe disease, we think was very,
helpful for for researchers,especially for those who are new
to sickle cell disease. But fastforward, you know, less, I
think, than 10 years after webegan funding, that it was just
(06:59):
a technology the moment intechnology was right too. Where
our resources met technology, itbecame clear that there was a
bigger opportunity and continueto push for, curative
approaches.
And, our funding, you know, itwas the right place, right time,
contributed to some of thesefundamental knowledge that led
to the development of what isnow Casgevy. And I think I never
(07:22):
thought, you know, I was aprogram officer at the
foundation at the time that,that in my lifetime, I would see
a therapy developed, you know,some insight move from the lab
into a patient and really makesuch a difference. So we
realized that there's so muchmore that went into that. Right?
That we provided some seedfunding, but we're, it's just
(07:44):
amazing to see the differencethat it can make in someone's
actual life.
Grant Oliphant (07:48):
Such a great example. I mean, I think it
illustrate, you know, the wayyou describe it, it's a 10 year
overnight success. Right? So andthey and part of the- part of
the genius of what you did,aside from being right place,
right time, was, having preparedfor that moment by putting
different disciplines together.Correct?
(08:09):
Right. As you think about doingthat to help address equity and
access issues, Because in thiscase, we're talking about a
disease that afflicts aparticular population that is
under researched and hasreceived, a lack of resources to
(08:30):
to address this problem. Whatwhat lessons did you learn from
the work in this area that helpyou think about addressing
equity and access issues morebroadly in other parts of our
society?
Sindy Escobar Alvarez (08:44):
That's a good question. So so what what
have we learned so so manythings? So one in terms of
collaboration is very powerful,but doesn't happen on its own.
Right? You have, I think youhave to bring the right people
and create the right incentives,and those incentives don't
always have to be huge.
Right? I mean, I think it's, assomebody put at our table making
(09:05):
the space for those ideas tohappen, or recognizing that,
there's a sorry. The secondthing that I think to me is a
learning, was something oflearning is that research
doesn't just happen in thecontext of academia. Right? That
(09:28):
is so important to understandwhat is important to- what is on
the other side.
Right? You're as a researcher,we tend to think of, well, we'll
do this to help this disease orthat disease that other disease,
but there there are peoplethere, right, on that side.
Grant Oliphant (09:42):
Right.
Sindy Escobar Alvarez (09:42):
And is that something they want? You
know, I think that after, youknow, we've seen the approval of
now a couple of of new curativeapproaches, we have also seen
patients say, well, sickle celldisease is part of who I am and
my identity. Like, are youtrying to remove part of my
identity by by giving me thisnew gene? You know? And so, it
(10:06):
raises important questions.
Right? Or or as researchers, wethink this is a huge is a great
cure, but we didn't think abouthow that affects fertility, for
example. And fertility of apopulation that already has
limited access to preservationof fertility to begin with.
Right? And so, it does it doesto me I think some of the
(10:29):
learning is that we need moreperspective as we approach a
problem.
It's not an issue that sciencealone can't solve. Right? That
you really need others to shape.What is the outcome you're
after? Is it really just a cureor what else is there to it?
Grant Oliphant (10:45):
When I think about the traditional image that
I as a nonscientist have of ofof how science gets done, it
sounds as though you're justdescribing a process that is
much more iterative and incontact with community than the
image I hold in my head of ofthe lone researcher in the lab
(11:09):
trying to, chase down a theory.Is that part of of Doris Duke's
philosophy about changing thebiomedical research enterprise?
Sindy Escobar Alvarez (11:19):
So that's a great question. It hasn't
been. I think that we have so Iam a researcher. You know, I
used to work in a lab, and and Ithink many of us who are or I
speak for myself, I suppose Ican say. But, you know, when I
came to the foundation, I'vebeen there my role has evolved
over the last 12 years, but myapproach is very much that of a
(11:43):
lone researcher.
If we support this great ideathat you had here, then, you
know, 10 years from now, youwill be leading a great lab into
great things that will helpsociety. And I think and now as
I have learned more throughbeing in philanthropy, and I
realized, well, that's not thewhole picture. Well, we helped
you get a great career, but wewe still have these problems.
(12:04):
And there are many other peoplewho are trying to solve the same
problem who researchers mightsee as competitors. Right?
And where the input of thecommunity doesn't always come
in. It's also made me thinkabout how we support researchers
who are at certain places.Right? And have certain, we we
(12:25):
tend to favor more some researchquestions than others where
community hasn't always beenpart of and where societies is
communities is an input fromsociety, I guess, is how I
think, where where that hasn'tbeen the norm. Right?
And and that is changing. Right?So, PCORI, for example, has
really done a lot of work to tounderstand how do we
(12:46):
productively bring research incommunities to to identify the
important questions andoutcomes. And so it is something
that that I think is is changingabout our thinking at the Doris
Duke Foundation of what role canwe have in, approaching research
questions in a more, societywith more societal input. Right?
(13:08):
With with that in contextbecause research is not alone,
cannot make change.
Grant Oliphant (13:16):
Well, thank you for that that perspective. I'm,
you know, I'm sensitive to theto the fact that it in in your
role, you're trying to tackle arange of inequities that you see
in the field. What do you thinkare the priorities? I mean, when
you go to work every day, whatwhat what dragon are you gonna
slay next?
Sindy Escobar Alvarez (13:36):
Exactly. That that's a great question. So
so this is you know, it can aswe heard from the discussion
this morning, there are manyissues. Right? And where do you
put your energies?
Right? And I think as we evolveour thinking, something that we
that I think a lot about is whatare those places where our
(13:59):
support and not necessarilybeing dollars, but where we
convene a table, where we have adiscussion, or maybe we support
advocacy. What what are thoseopportunities where our it's
almost like a a match. Right?Like, our our input of energy is
a match that starts a fire thatfuels a whole, car or a whole
(14:19):
rocket ship.
You know? I it's because asfoundations, our dollars are
small. Right? So if we fill agap, then we are stuck filling a
gap in one place, and we're notreally changing the overall
condition. So so I think aboutthat a one of what is the bigger
opportunity that could reallytransform a system, and who are
those champions that can help usidentify, well, what are those?
(14:43):
Right? And I heard some ideashere today of, we can approach a
model, but how do we make it isthe word sustainability. Right?
So where where are thoseopportunities? We're we're not
talking about a patch, but,something that might be a
heavier lift or might be seen byby others as your approach might
be it's like a crazy idea.
(15:04):
Right? We're doing some crazyideas right now, but I'll follow
in some crazy ideas. But where
Grant Oliphant (15:09):
Well now, you know, I gotta ask you about
that.
Sindy Escobar Alvarez (15:11):
Yes. So we I think I'm attracted also to
difficult problems. So that andmaybe as a scientist, you know,
maybe scientists can relate tothis here that, we want to find
what was the right answer here.Right? And that that drives us.
Right? And so one of the forexample, one of the ideas that
we're pursuing recently thatcame up actually in conversation
today here is how do we thinkabout race and ethnicity in the
(15:34):
context of research and health?And how that has led to
inequities. Right? Just how wecommunicate about the
association of race with healthoutcomes.
How does this shape our thinkingand further stereotypes that are
harmful for equitable clinicalcare? And that's the idea, but
(15:55):
what we're actually trying to dois can we change research
practice so that we are morerace conscious. Right? So that
when I design an experiment, andencounter race as information, I
make best use of thatinformation in the context in
social context. Right?
(16:15):
So that as a researcher, wedon't further inequities because
there are examples where -sorry.This is abstract. Let me know.
Grant Oliphant (16:23):
This is I think this is exactly on topic.
Sindy Escobar Alvarez (16:26):
That, we think there's there's evidence
that as a research community, wemake inferences about race and
ethnicity that are really as asif they were related to biology
or outcomes in medicine and orthey relate to outcomes, but as
if they were related to biologywhen they're not. Right? They
might be indicative of anexposure that because of
(16:48):
experience of race in thiscountry, you you have a you, you
know, you're more likely to havea disease, for example, or have
x or y or z. But, the way inwhich research has used that
information in some cases hasnot been rigorous. Right?
We make inferences erroneousinferences about biology, but,
also, we have incomplete dataand we still make inferences
(17:11):
about race and ethnicity. Andthat has gone unchecked. Right?
And there there are tools ofmedicine that many of you
probably use every day, anywherefrom measuring kidney function
or pulmonary function tointerpreting neutrophil counts
that have an element ofrace in them. And we don't I've
(17:31):
learned all of these, and I findit fascinating because every day
I learn something new.
How we assess cognitive functionis normed by race. And so that
actually has implications forpatient care. Right? And so we
are trying to bring light tothat and to the research
community to say what checks andbalances can funders, you know,
(17:53):
not just nonprofit funders, butthe NIH, others can have in
place to make sure that that asa research community, we follow
rules that further equity.
Grant Oliphant (18:02):
Let's stay on this for for just a moment
longer because I, as I waslistening to you, I was
reflecting on the, kind ofbroken cultural moment that
we're in where discussionsaround race are suddenly
volatile in a way that can makeit difficult to discuss the
(18:26):
applicability in in variousdisciplines. And, you know, I'm
thinking, philanthropy has beenpaying attention to a lot of
cases around affirmative action,the Fearless Fund case, and, you
know, our ability to concentrateresources on particular
populations.
When you talk to people to helpthem understand why it's
(18:47):
important to look at race as afactor in better research, What
is the case you make to them?
Sindy Escobar Alvarez (18:55):
It's about better science and better
tools for medicine. I think itis and for health. It is about,
giving the treatment giving thehealth treatment that everybody
deserves and needs. Right?Because what we see right now is
because of how you look, becauseof how you you may self identify
(19:16):
or others may identify you interms of race, you may be
getting differential treatmentthat doesn't further your own
health, especially if you'reblack or brown in America.
And so it is a matter of healthcare and medicine medicine and
research serving equally orequitably, I guess, is it right?
(19:39):
Because right now, we are if ifI'm black, my and depending on
the hospital I go to in the US,it might be underestimated how
well my kidneys are functioning.And that may keep me from
getting care for kidneyfunction. Right? And so it is a
matter of of of of health forAmericans, you know, especially
(19:59):
those who have, experiencedunequal treatment for so long.
Grant Oliphant (20:05):
Thank you. I I just wanted to draw that out
because of how important that Ithink it is to keep saying this,
that the work you're doing, andthat so many of the scientists
we're privileged to fund and somany of the frontline clinicians
that we're privileged to fund aswell are doing is trying to be
(20:26):
sensitive to the special,communities and needs that
they're serving. And if you'reoblivious or blind to that, it
ends up being bad for everyone.So I just appreciate you're
you're really focusing on that.Let's talk for a moment about
caregiving.
Sindy Escobar Alvarez (20:44):
Yes.
Grant Oliphant (20:44):
Because I know this is an area you're focusing
on. So can you tell us a littlebit about what you're doing
there?
Sindy Escobar Alvarez (20:50):
Yes. So so we are, of course, you know,
we similar to to yourfoundation. So we are, building
a more creative, equitable, andsustainable future. So we think
of all all aspects equity. Whathow does it intersect our areas
of work?
And for caregiving, I thinksomething that we all
experienced or saw was really anvery visible during the height
(21:13):
of the pandemic is howunsupported caregiving affects
our productivity as individualsin our, you know, in our
professions, right, or in anyany activity that we have. It's
not the caregiving. It's thelack of support for caregiving.
Right? And that affects us.
And how we saw this very acutelyis that we supported physicians
who also do research. These arepeople that, at a minimum, they
(21:36):
have already 2 jobs. Right?They're doctors and they're
researchers, and they're alsopeople. And so what we knew
before the pandemic is that,women tend to fall out of- -and
this was in the context ofacademic research- that women
tended to fall out of theworkforce at higher rates,
earlier in their career.
(21:57):
Within I think it was somethingit's something like within the
1st 10 years of faculty facultyappointment, 40% faculty fall
out of workforce, and many ofthose are women. And there are
many factors. Right? We don't wedon't fully understand, but we
heard from from many researchersthat there was this comp another
happy word is their caregiversand that if they sometimes
(22:20):
research had to be cut out oftheir activities because they
had to show up to the clinicregardless. There were doctors.
And if they had a sick parent orsick child who had chronic
illness or, you know, they hadelderly parents, they also had
to take those hours. And soresearch was the one thing that
had to go. And so we thought,well, why don't we do an
experiment? Here's, again, youknow, our our research hats of
(22:44):
can we, prevent attrition, offaculty from research careers by
supporting identifying who arecaregivers and giving them
additional support for research.So it is we give you extra a
little bit of funds, you know,and, I mean, not enough to cover
a technician for a year or 2 sothat they could go on and be the
(23:04):
humans the caregivers they areor they were at the time and
have their research continue.
So, so we we found that this isa way, and and studied. We have
we gave a grant to a researcher,doctor Reshma Jagsi, who was
then at the University ofMichigan and has since moved to
Emory, who studied gender equityin academic medicine. And doc
(23:27):
she documented that thisactually helps change the
conversation at institutions.Right? So it's not just
addressing, need in the momentfor a researcher, but it helps
in the context of theinstitution change the
conversation from you are notreally committed to research to
we understand you're a caregiverand you deserve more support so
that we can continue to benefitfrom a science that you are
(23:49):
capable producing.
So that's that's how we havebeen supporting community.
Grant Oliphant (23:54):
It's a it's a wonderful initiative. And I, so
thank you so much for fordemonstrating the value of that
work. It leads me into thequestion of other ways in which
philanthropy can make adifference. And you know,
obviously, one of the notionswith private philanthropy is we
can invest in ways that aredifferent from government funds
(24:18):
and from business, where we cantake risks over a longer period
of time, etcetera, etcetera.Where do you think private
philanthropy or where do youwish private philanthropy would
do more work in this space topromote- to genuinely promote
community well-being?
Sindy Escobar Alvarez (24:37):
Well, so I am a little biased.
Grant Oliphant (24:40):
That's okay.
Sindy Escobar Alvarez (24:40):
I'll preface it with that. To come
back to your comment earlier,right, that there are areas
where we can go without fear.
Right? The the where we canreally bridge different
perspectives and try to find,solutions. I think something
that I wish we would do more ofis, recognize that research
(25:02):
happens in different contexts,not just in academic settings.
Right? And this is somethingthat we've heard here a lot
today that there's a lot ofopportunity, but where the
incentives are not there, whereI think that we will take it
it'll take many differentplayers, not just philanthropy.
But I think that what we asphilanthropy can do is try to
(25:22):
eliminate that there is this newfrontier of innovation, that
that there is possibility. Andmaybe if the opportunity and
possibilities aren't visible andclear, have those conversations
of how how do we eliminate whatwhat are the opportunities here?
You know, how essentially, beingthe ones that bring awareness to
(25:44):
the research communities andothers who need to be involved
to change our focus fromsick care to healthy care.
Right? And and working together.
I mean, I think sorry. That'sanother thing that I wish we'd
do more as philanthropy is,seeing where those opportunities
are that we may do thingsdifferently, but where we have a
common goal that we can elevateissues that are of societal
(26:11):
importance together. Right?Because I think that makes, a
bigger hopefully, it has biggerimpact.
Grant Oliphant (26:17):
Well, I I I love your framing of a shift from
sick care to healthy care, andthat one of the ways of getting
there is through this broaderlevel of collaboration that
philanthropy in theory can helpbring about. You know, I'll
confess. We have in this roomwith us a set of leaders who are
(26:38):
are bridging the worlds of beingin community providing care and
doing the seminal research thatis driving, progress forward
nationally and globally on onsome of the most pressing
issues- research issues of ourtime. And I confess that when
(26:59):
when we first had the idea,someone had the idea of putting
this group together, I thought,how's that gonna work? So we
don't we don't always naturallylean into putting groups
together, but why is thishealthy?
Why is this important for thesake of better medical research
(27:20):
and also better care?
Sindy Escobar Alvarez (27:22):
For many reasons. It is important for
many reasons. I think one ofthem is what we we truly
understand what are the what arethe hurdles, right, and where
are the opportunities. So someof the conversations that I
heard were, you know, how how dowe make data more accessible.
Right?
And, yeah, I'm looking at youhere. We saw a table of how how
(27:44):
does the data really flow withina hospital and health system,
and and what are the the hurdlesa researcher may have, for
example. So one of those arevery, very, like, in the weeds.
Right? So some of thoseopportunities.
But I think some of the largeropportunities are also to begin
to see that all of it isimportant. Right? It's not just
me understanding how a cell, youknow, regulates growth for
(28:10):
cancer is important, but is howdoes that really make it how
does the discovery makes its wayto the clinic? Or is that really
the as a researcher, I think Iit illuminates what are the real
needs that that clinicians havetoday. You know?
That maybe my efforts could beoriented even if in a little
(28:31):
way, you know, in a in a beginto to to be better informed-
inform more about what are theon the ground needs for
clinicians, for example. Soresearch that I think
understanding that there'sdifferent types of research that
I needed to move health is notall about discovering the new
pathway to develop a new drug.
Grant Oliphant (28:51):
Right.
Sindy Escobar Alvarez (28:51):
But that there are other problems that
really need our, intellectualcuriosity to move them forward.
I think that that is soimportant for these spaces to to
illuminate what are other typesof research questions that are
also important and that we needto put our energies to. And I
think for us as philanthropistsphilanthropies is how do we
(29:11):
elevate that as those ideas assome that need resources
nationally. Right? Because Ithink another conversation we've
had is how do funding modelshelp further those ideas or or
or not help.
Right. You know? So I think wecan carry that voice and say,
how can we change the fundingstructures? And maybe that's,
(29:34):
again, a difficult problem, butI don't think it's impossible.
Grant Oliphant (29:38):
Well, it's one we can actually maybe do
something about
Sindy Escobar Alvarez (29:40):
Yes. Exactly.
Grant Oliphant (29:42):
So, in terms of in terms of bridging the worlds
of of, community health carepractitioners and medical
researchers, what what would youhope to encourage, among these
among the folks in this room andthe larger community nationally
in those worlds? What do youhope to see more of?
Sindy Escobar Alvarez (30:03):
I hope to see more understanding that
health is not a collection ofdisciplines. Right? I think as a
research community, we may tendto see the problem only very
narrowly through, I'm asociologist or I'm a biochemist
or and it's true that we bringthat specialized knowledge, but
(30:25):
at the end of the day, we needto focus on the humans. Right?
That and what are you know, it'sso we have mental health.
Right? Is it an issue of it's anissue of the brain, or is it
environmental, or is it all? Andhow do we bring all of our
abilities around the problemrather than around my own career
or my own academic path or, orthe field of x or y or z? Right?
(30:50):
So I so I wish I'd we'd see moreof that centering around what
are the, somebody said on mytable, the outcomes we want to
see and the the the problem, andhow do we bring all of our
abilities to those.
Grant Oliphant (31:04):
So as you heard the conversation this morning,
among the leaders in this groupabout the challenges that
they're facing and theopportunities that they see.
You're looking at it from anational viewpoint where you've
talked with folks all around thecountry about this. Was there
anything that stood out to youin this conversation as
(31:26):
especially, emblematic of whateverybody is talking about? Or
and was there anything thatstood out to you as unique to
San Diego?
Sindy Escobar Alvarez (31:37):
That's a good question. And I have to say
we're starting to have thisconversation, so we hope that
others will join in in the forlater in the fall. But from what
I hear a lot of is recently isthe focus on communities as the
source of the information forwhat is important and what is
(31:57):
important now. I think that is acommon thread, of what I have
heard. And what is, unique toSan Diego, I think that there's
just all the the recognitionthat well, maybe this is I have
to say I'm coming from outsideof San Diego.
So, the recognition that thereare communities already here and
(32:18):
in this room that could, theycould identify together what is
it that's needed. I think thatis something that and and there
are unique, unique problems thatwe heard about related to the
nearness to the to the to theborder that we're seeing this
crisis of immigration, right,crisis, climate crisis. Right. I
(32:39):
think that's something that Iheard here today.
Grant Oliphant (32:42):
Great. Thank you. Well, this seems like an
opportune moment to turn to SanDiego for, for some questions.
What would you all like to hearfrom Cindy or from me?
Crystal Page (32:56):
And we have a mic just because we're recording.
Guest 1 (33:03):
Thank you so much for your insights. I was curious how
you go about engagingpoliticians and policymakers. I
just got back from a trip toCapitol Hill, for a
congressional life sciencesdemonstration. And I found it
enlightening. And, and veryinterestingly, I saw a lot of
(33:24):
young people working.
The staffers in DC are veryyoung people who are very eager
to learn more about science.They have mostly political
science backgrounds, but I foundthat very valuable to try and
explain the science to them, andthey were very eager to learn
it. So I wonder how you engage.
Sindy Escobar Alvarez (33:39):
Thanks for bringing that up. So I'm a
I'm a scientist, so I I am, verymuch in a learning curve on
that, and I think it's somethingthat philanthropy could do more
of, you know, engage with, and,of course, we have some
limitations, but I don't thinkthat, we have is entirely
exclusive. You know, we have to,find ways to to interact with
policy makers, But I think it'ssomething we need more of, and
(34:01):
what we need more of is alsothose of you who are doing the
work because I think, you know,I can say it from my, you know,
5th Avenue office where I readabout all the work that you do,
but where the the directexperience is is is so important
to put it all into context. Youknow, we have been talking a lot
about, at the foundation aboutnational funding, for health and
(34:25):
how that flows and what are thecultural barriers to changing
that. And I and I think that weneed examples.
Right? What does that look like?What does a different funding
ecosystem look like? And, whatare the real challenges? Right?
Or like we heard here is, youknow, we we can embed
researchers into federalqualified health centers, but
(34:47):
then the funding is gone. Sothose are such tangible examples
that I think we need more moreears to hear about. And then so
we we invest quite a bit morerecently in communications.
We're very, very keenly aware ofwho needs who who could hear
what is the message that we're,trying to spread and who do we
(35:08):
need to engage. So we do engagemore in, communications driven,
in in marketing and influencestep strategies.
Grant Oliphant (35:17):
I I think that's such an important point because
sometimes in philanthropy andand I think in in various
disciplines, we make anassumption that, oh, once we
know something, everybody willjust do it. Right? Right. And
and it's the last thing thathappens. You know, what we what
we actually have to figure outis when we know something, we
(35:38):
have to collect the data and wehave to we have to verify what's
true.
But then we have to figure outhow to tell that story so that
it's compelling in a way thatpoliticians have to pay
attention to and others as well.So thank you for that question.
I think the communications pieceis really important. Alright.
Other questions?
(36:07):
And if you wouldn't mindidentifying yourself.
Jimmy Figueroa (36:09):
My name is Jimmy Figueroa and I'm with TrueCare.
I have a question about thedevelopment of the sickle cell
treatment and the implementationat the community level. With,
our direct service providers,how has that process gone? What
have you learned? I know youmentioned a little bit, about
some of the challenges that,were not expected at the time.
Grant Oliphant (36:31):
And is it affordable? Is the treatment
affordable for our communities?
Sindy Escobar Alvarez (36:35):
Yeah. So those are good questions. And
and an example of how I thinkdifferent players interact with
the the issue different points,and, you know, where most of our
energies went to were, intodeveloping and contributing
research dollars to develop thattreatment, but where there are
real real challenges in access.I think the cost is estimated
(36:56):
something like $1,000,000 orsomething like that. It was
equal it's you have toessentially get a bone marrow
transplant plus the transfer ofedited cells.
Right? And it it is somethingthat is getting a lot of,
thought, I think, by people whoknow know a lot about these. One
example is the innovativegenomics, IGI, Innovative
(37:18):
Genomics Institute, I think,which is just north of here, at
UC Berkeley Mhmm. Headed byJennifer Doudna, who, was one of
the, you know, the discoverersof CRISPR Cas9. And as a
scientist, I think this is justa is such a great example of how
this group is thinking, not justabout how do we develop
therapies, but what models canwe build for commercialization
(37:40):
that take into account access.
Because right now, you have togo to a specialized center to
get my understanding is, to getthis therapy. And it is not
accessible to to everyone.Right? It's, because of cost.
You know, we have to insurancecomes into play.
So there are organizations thatare doing a lot around that. You
(38:01):
know, the American Society ofHematology has been looking at,
models for how to make this moreaccessible. And it is an example
of just having the cure wasn'tenough. Right? It isn't enough
to just have that.
Grant Oliphant (38:17):
Other questions? There's so much animated
discussion. There's gotta be acouple here.
Guest 2 (38:25):
Just curious as Do you guys choose what's important or
what questions to tackle. Canyou shed a little bit of light
on that process? And it's, like,who do you include in in those
conversations? Yeah. Because Ithink that's where you guys have
a lot of power of who you bringto the table.
(38:47):
So I was curious if you couldspeak to that.
Sindy Escobar Alvarez (38:49):
Agreed. And that's a that's a very good
question because, you know, wewe might just look at what's in
front of us. Right? Or what's infront of my computer, I guess, I
should say, or, or what our owninterests are or our own biases.
And and I think some of thatgrowth process in philanthropy
(39:10):
as a scientist is seeking outdifferent perspectives and
knowing we're engaged in makingsure that we're not just
listening to the same group.
Right? So, something that issomewhat new to us is we are
when we're exploring a new sortof frontier, you know, sometime,
in this case, the intersectionof, research and care, We're
(39:33):
doing it publicly. So we are weare setting out, and I'll be
happy to share that and maybeyou can distribute it to this
group, a request for proposalswhere we're really trying to
listen, you know, inconversations like this. What
are the important questions? Andwe started with a thought of
thinking with a thought of, isdo we share this with academic
institutions?
(39:53):
And as as we hear more of theseconversations, so that now
that's doesn't feel right.Right? I think it's it's on us
to to seek out differentperspectives, and it is it's
tricky.
Grant Oliphant (40:06):
Others. Yes.
Guest 3 (40:14):
Am I on mic? Yep. For a second. Before, but I am
fascinated by it, which is theuse of race and ethnicity in
clinical algorithms, since I Iwork on a project that's
essentially an implementationscience project with all the
clinical groups and FQHCs herein San Diego County about heart
attack and stroke prevention.And the number one tool we have
in our tool kit is the ASCVDwhat we call the ASCVD risk
(40:36):
calculator, which for those ofyou who don't know, calculates
your 10 year risk of having aheart attack and stroke.
It is meant to be used at apopulation health level. And one
of the factors that goes intothe little calculator, you can
all download the app and seewhat your own 10 year risk
score, is your race. And there'sbeen a little debate about that,
about whether or not it's age,sex, race, and then, like, your
(40:59):
cholesterol, your, bloodpressure, etcetera. And does
race belong in there or not? AndI'm really, really curious about
that and your perspectivesbecause we now know that all of
a sudden American HeartAssociation is changing their
mind, maybe, and saying racedoesn't belong in there.
And what is how do we thinkabout race in clinical decision
(41:21):
making? I think that's a reallyfascinating area where there is
a bridge very directly betweenthe work you're doing and
clinical care. So I'mfascinated.
Sindy Escobar Alvarez (41:30):
Yes. And and something very important you
touched on there, many things,is an organization that set
standards of practice, you know,of how that is perceived. Right?
They changed their mind. But Ithink that how we view this is
is a con science evolves.
Right? And science is exists inthe context of its time. And so
(41:53):
at the time, maybe that was thebest available information we
had. But now we know thatcategorizing people and you and
often isn't, like, 4 categories.Right?
You're white. You're black.You're Asian. What is the other?
I don't know.
Right? Is that really a way tocategorize human diversity? You
know, it's it's imperfect.Right? At the time, maybe he
(42:14):
gave us some information that wethought would make it easier for
a clinician to assess our 10year risk of heart disease.
But now we know that that's notthe full picture. Right? And so
we also know that how weincorporate race, as as I
mentioned earlier, can furtherstereotypes and can further
misconceptions about health andillness. And at worst, you can
(42:37):
actually change, theirrecommendation medical
recommendation for worse for thepatient. And so I think this is
an example where it's complex.
Right? Where the factoring in ofrace was being made to account
for a possible higher risk ofdisease in certain groups,
racial racially categorizedgroups. But there are other
examples where, there's nojustification for that and where
(43:00):
the factoring of race canunderestimate your likelihood of
having a a an illness. Andthat's when we get into trouble.
Right?
Where the consideration of racewas not helpful, and in fact, is
harmful.
Angelina Renteria (43:19):
Hello. My name is Angelina Renteria. I'm
with Indian Health Council, andI'm so appreciative that you
brought that up and for theadditional question here. And, I
I would like to make a commentand then a question, in terms of
research, race based researchand the impact in tribal
communities, for example. And,as a clinician, the interesting
(43:40):
way to navigate thatinformation, especially if it's
not fully understood by acommunity member, for example,
in native communities, we areone of the communities with the
highest prevalence of, and I'mnot going to name all of the
things, but diabetes, obesity,substance use, domestic
violence, and the list justcontinues.
And so in, creating anenvironment where we're
(44:03):
advocating for one's health, andalmost sort of trying to balance
out what the community hearsabout themselves, where they
have now this belief that I'mdoomed. And there's this really
fatalistic mentality that nomatter what I do, the likelihood
of me, you know, dying fromobesity, CKD. You you we again,
(44:30):
the list goes on. It's a uniquedance of how do we inspire,
staying ahead of the statisticand, for those that are really
making an effort to make surethat we steer clear of all of
these things that we're told arepreventable, is there an impact
there? Now we have additionalstressors.
I I'm more likely to have all ofthese things happen in my family
(44:52):
because of my race. You know,I'm I would really love to know
is there is there researchthat's studying the impact of
these things? And for those thatare active actively pursuing and
and trying to, you know, breakthe cycle of, I'd love to hear
more. You know, are thereopportunities to study this?
(45:13):
Because we are hearing from ourtribal communities who are
trying so hard to get ahead ofthe statistic and the stress
related.
You can clearly hear and feel itfrom those community members.
It's it's there. It's prevalent.Just I don't know if I asked my
question clearly.
Sindy Escobar Alvarez (45:29):
But Yeah. No. I I really appreciate your
your, I mean, expanding on howhow an inference translates into
what is interpreted and heard bycommunity. Right? And and this
is what we're hoping that the rewe can get to a point where the
research community does a betterwe all do a better job, right,
of how do we just because youhave an observation is is a real
(45:51):
observation, but it doesn'tdetermine it's not causal.
Right? It's it's not it's notbecause of your race. You know?
It is because of what your yourexperience of race has exposed
you to. Right?
And so, I think reframing thatis so important. There was a
recent paper, of researchers wholooked at, a brain bank of,
(46:14):
African American donors in theMaryland area. And they were
trying to study the, is is the,signaling in the brain, and this
is post mortem. Right? And theyhad disease like, cognitive,
degenerative diseases likeAlzheimer's and so on.
Is it different than a brain,that didn't have from a person
(46:36):
who have that disease? And atnatural conclusion in another
time, it might have been beingbeing, you know, if because
you're African American, yoursyou're x y z, you know, you see
that, there is this associationwith with race. But I think
knowing better now, you know,understanding the interplace
(46:57):
interplay of genetic molecular,you know, signaling and, and
exposure because of a racialgroup. You know, the the
conclusions are different andhow that was communicated of the
exposures, which arepreventable, have resulted in
this observation in in thisparticular cohort. And so to
(47:20):
report yeah.
So I think we can do betterabout communicating, and that is
not causal. Right? I think thisis this is one need to break
through of saying it's not, itis exposures that you have had
as a community and that arepreventable. Right? That that
hopefully is not yeah.
Grant Oliphant (47:36):
Alright. I think we have time for one more.
Guest 4 (47:44):
Thank you. My name is Razel Milo from University of
San Diego. There's a lot oftalks about artificial
intelligence. Do you see thatartificial intelligence as a
tool that we can use to bridgehealth equity?
Grant Oliphant (48:07):
I do based on on what I am hearing about, AI
tools that are under developmentin the health care space that
they are able, for example, toget past some of the cognitive
biases that humans bring. Sothey they're an additional tool
for practitioners to see pastwhat may be their own unseen
(48:31):
biases, and that may addresssome of these issues around race
specific treatments and theirapplicability. And so I think I
think it's hopeful in thatrespect. The downside is that
we've also seen with AI that thetools are only as good as
(48:52):
they're trained to be. And and Ithink getting the bias out of
the machine is gonna be anongoing challenge for for this
work.
But I think it has I do think itactually has great promise in
that regard. Would you agree?
Sindy Escobar Alvarez (49:07):
I very much agree. And I think it it
especially with biases, I thinkthis is a community that is
thinking of that, an equity fromthe start that there, there are
groups that are thinking of theethical implications and how to
get ahead of it so that we don'tfind ourselves to the problem we
have with these other clinicaltools where then they're
embedded in medicine and justcausing i trouble.
Grant Oliphant (49:31):
So on that hopeful note, I'm gonna ask you
a final question, which is,which is how you see the the
arena of, philanthropic fundingfor medical research and
caregiving evolving over thenext decade. What does Doris
Duke, think is the is the art ofthe possible over the next
(49:54):
decade?
Sindy Escobar Alvarez (49:56):
Well, we really think we need to work
together. So I imagine in 10years, philanthropy will look
different where we are, movingbeyond the individual missions
to our common sharedunderstanding of problems and
applying our missions to commonground. Right? Where, we have
(50:19):
moved beyond this perennialdiscussion of do we need
research a or research b? No.
We need it all. And how do weget how do we really put our
energies into furtheringresearch that's important and
elevate the prestige of that,which is not currently
(50:39):
considered the what what isgoing to give you a Nobel prize.
Right? I think we I hope that in10 years, we have changed
chipped away at that of what isprestigious research to what is
important research to pursue.
Grant Oliphant (50:52):
I think that's a beautiful vision. So on that
note, Sindy Escobar Alvarez,thank you so much for being here
for this conversation andcontributing so much, and to
our, our leaders in the room aswell, thank you for being part
of the conversation.
Okay. Well, I just wanted to turn to the last
portion that we have beforelunch. I'm just super excited to
introduce our wonderfulpresident and CEO of the Conrad
Prebys Foundation, GrantOliphant, who has a long and
storied history in philanthropy.
Grant Oliphant (00:28):
Which we won't go into.
Emily Young (00:31):
But we're also really lucky we did recruit him
to San Diego, and it's becauseof his leadership that we're all
here today. And also oh, ofcourse, now I just lost- here it
is. I also wanted to introduceto you Sindy Escobar Alvarez,
who is the program director formedical research at the Doris
Duke Charitable Foundationexcuse me, Doris Duke
(00:54):
Foundation. And, they're goingto have a conversation, and we
brought, Sindy Escobar Alvarezto, to San Diego because, she is
in charge of, the medicalresearch program at Doris Duke.
And for those of you who havenot heard of Doris Duke, maybe
(01:14):
there are a few of you, maybe.
But for the rest of us, we knowthat they're a hugely impactful
foundation that have beenleading the field for decades.
And we're certainly looking tothem for what we can learn from
them in the work that we'restarting in San Diego. So I'll
turn it over to you.
Grant Oliphant (01:34):
Hello, everyone. It is a delight for us to be
here with you, and I just wannathank Sindy for, taking the time
to come out from New York and bewith us to have this
conversation. I think we'realready learning a lot just from
what we heard this morning.Sindy, you're a fascinating
(01:55):
person
Sindy Escobar Alvarez (01:56):
Thanks.
Grant Oliphant (01:57):
Because you you're you're leading a program
area where you've done deepscientific work. And in talking
with me just a moment ago, youdescribed how you are you think
as a scientist. And I thinkthat's where I wanna start. How
has being a scientist affectedyour thinking about the role of
philanthropy? Before we get intoany of the work and what you're
(02:19):
doing, let's talk about how yougot there.
Sindy Escobar Alvarez (02:22):
You know, thanks for for that question
because I think it so, shapes,many of the the ways in which I
have gone about my work, butalso in which I've followed and
what others have built beforeme. And I think information
helps us, even incompleteinformation, helps us move
forward and identify where toput our energies. Right? And so,
(02:46):
that is how it has affected. Youknow, I see the world through
questions.
Everything to me is a questionfor better or worse because we
don't always have an answer. Butwe always as a scientist, I can
always think of, well, what dowe need to know to make a next
step or to decide whichdirection do we go in, you know,
especially, when there are somany societal problems and in
(03:08):
medical research in particularlywhere there are much larger,
sources of funding. Right? Andso as a philanthropy, we try to
find what is our place, what isit that we can do here. So I
think, knowing how to approach,what questions to approach and
what information to gather andhow do you parse out, you know,
how do you how do I decide howmuch time do we as a team put
(03:30):
into into answering a questionor not to to find a way forward?
I think it's very that's how Ithink of of my role as a
scientist, you know, in terms ofquestions. Right.
Grant Oliphant (03:40):
So let's let's turn for a moment to the work,
and and then we'll come back tothe convergence of those worlds
in a moment. But I wannaacknowledge that in 2023, the
FDA approved the first CRISPRbased cure, for sickle cell, a
disease that had been understoodsince the fifties, Nineteen
(04:03):
fifties for anybody who'swondering. And in a way
illustrated some of thechallenges that the medical
research community continues toface in terms of equity and
access issues. So I'm I'm justbefore we get into that, I'm
just curious to hear you talkabout your foundation's role in
(04:24):
in bringing that breakthroughabout.
Sindy Escobar Alvarez (04:26):
Right. Right. And that's that's an
example where there are so manyissues at play. Right? There are
many inequities, and I think,talk to talk about data and
connecting with the communitiesthat drive the work.
Right? So I think at the time,if many of you may know that, in
general for developing a newdrug, you know, it's not only a
(04:50):
time consuming process, but it'sa very expensive process. And so
at the time, we really and thiswas before my time there. I
actually managed a lot of thework that we supported, but the
the actual position ofsupporting this field preceded
me. But we we thought hard aboutcan we as a as a relatively
small foundation and player inmedical research have a
(05:14):
transformative role in in adisease that doesn't have any
didn't have doesn't have anycures at the time with bone
marrow transplant is still, youknow, it was the only option if
you had a match.
And, through talking to thecommunity, through understanding
technology, I think at the timewas a big, you know, a big
factor where we saw thattechnologies that were being
(05:35):
applied to cancer research thatwere helping us understand,
genetics better were not beingapplied, to this field that was
neglected. And so we did, see anopportunity to play a role in
bringing the community to afield that needed that insight.
Right? And to to work with thosethat have been in the space for
(05:56):
a long time to guide, well, whatare the important research
questions here? And we we weapproached this is a with a very
broad, lens.
You know, we said, what are thequestions we need to learn more
about in sickle cell disease?And we supported all kinds of
projects anywhere from genetherapies, you know, and at the
time they were nascent. Right?Like, how do we, get they had
(06:17):
been gene based, gene modifyingapproaches, such as with viruses
and things like that, but CRISPRwasn't there yet. Right?
And so, the but scientists werealready going in that direction.
And then we also supportedprojects that we're trying to
understand how do we preventdamage, cognitive damage from
stroke and sickle cell disease?And so having that, you know,
(06:38):
similar to this room, havingthat, mixture of of different
fields and and ways of viewingthe disease, we think was very,
helpful for for researchers,especially for those who are new
to sickle cell disease. But fastforward, you know, less, I
think, than 10 years after webegan funding, that it was just
(06:59):
a technology the moment intechnology was right too. Where
our resources met technology, itbecame clear that there was a
bigger opportunity and continueto push for, curative
approaches.
And, our funding, you know, itwas the right place, right time,
contributed to some of thesefundamental knowledge that led
to the development of what isnow Casgevy. And I think I never
(07:22):
thought, you know, I was aprogram officer at the
foundation at the time that,that in my lifetime, I would see
a therapy developed, you know,some insight move from the lab
into a patient and really makesuch a difference. So we
realized that there's so muchmore that went into that. Right?
That we provided some seedfunding, but we're, it's just
(07:44):
amazing to see the differencethat it can make in someone's
actual life.
Grant Oliphant (07:48):
Such a great example. I mean, I think it
illustrate, you know, the wayyou describe it, it's a 10 year
overnight success. Right? So andthey and part of the- part of
the genius of what you did,aside from being right place,
right time, was, having preparedfor that moment by putting
different disciplines together.Correct?
(08:09):
Right. As you think about doingthat to help address equity and
access issues, Because in thiscase, we're talking about a
disease that afflicts aparticular population that is
under researched and hasreceived, a lack of resources to
(08:30):
to address this problem. Whatwhat lessons did you learn from
the work in this area that helpyou think about addressing
equity and access issues morebroadly in other parts of our
society?
Sindy Escobar Alvarez (08:44):
That's a good question. So so what what
have we learned so so manythings? So one in terms of
collaboration is very powerful,but doesn't happen on its own.
Right? You have, I think youhave to bring the right people
and create the right incentives,and those incentives don't
always have to be huge.
Right? I mean, I think it's, assomebody put at our table making
(09:05):
the space for those ideas tohappen, or recognizing that,
there's a sorry. The secondthing that I think to me is a
learning, was something oflearning is that research
doesn't just happen in thecontext of academia. Right? That
(09:28):
is so important to understandwhat is important to- what is on
the other side.
Right? You're as a researcher,we tend to think of, well, we'll
do this to help this disease orthat disease that other disease,
but there there are peoplethere, right, on that side.
Grant Oliphant (09:42):
Right.
Sindy Escobar Alvarez (09:42):
And is that something they want? You
know, I think that after, youknow, we've seen the approval of
now a couple of of new curativeapproaches, we have also seen
patients say, well, sickle celldisease is part of who I am and
my identity. Like, are youtrying to remove part of my
identity by by giving me thisnew gene? You know? And so, it
(10:06):
raises important questions.
Right? Or or as researchers, wethink this is a huge is a great
cure, but we didn't think abouthow that affects fertility, for
example. And fertility of apopulation that already has
limited access to preservationof fertility to begin with.
Right? And so, it does it doesto me I think some of the
(10:29):
learning is that we need moreperspective as we approach a
problem.
It's not an issue that sciencealone can't solve. Right? That
you really need others to shape.What is the outcome you're
after? Is it really just a cureor what else is there to it?
Grant Oliphant (10:45):
When I think about the traditional image that
I as a nonscientist have of ofof how science gets done, it
sounds as though you're justdescribing a process that is
much more iterative and incontact with community than the
image I hold in my head of ofthe lone researcher in the lab
(11:09):
trying to, chase down a theory.Is that part of of Doris Duke's
philosophy about changing thebiomedical research enterprise?
Sindy Escobar Alvarez (11:19):
So that's a great question. It hasn't
been. I think that we have so Iam a researcher. You know, I
used to work in a lab, and and Ithink many of us who are or I
speak for myself, I suppose Ican say. But, you know, when I
came to the foundation, I'vebeen there my role has evolved
over the last 12 years, but myapproach is very much that of a
(11:43):
lone researcher.
If we support this great ideathat you had here, then, you
know, 10 years from now, youwill be leading a great lab into
great things that will helpsociety. And I think and now as
I have learned more throughbeing in philanthropy, and I
realized, well, that's not thewhole picture. Well, we helped
you get a great career, but wewe still have these problems.
(12:04):
And there are many other peoplewho are trying to solve the same
problem who researchers mightsee as competitors. Right?
And where the input of thecommunity doesn't always come
in. It's also made me thinkabout how we support researchers
who are at certain places.Right? And have certain, we we
(12:25):
tend to favor more some researchquestions than others where
community hasn't always beenpart of and where societies is
communities is an input fromsociety, I guess, is how I
think, where where that hasn'tbeen the norm. Right?
And and that is changing. Right?So, PCORI, for example, has
really done a lot of work to tounderstand how do we
(12:46):
productively bring research incommunities to to identify the
important questions andoutcomes. And so it is something
that that I think is is changingabout our thinking at the Doris
Duke Foundation of what role canwe have in, approaching research
questions in a more, societywith more societal input. Right?
(13:08):
With with that in contextbecause research is not alone,
cannot make change.
Grant Oliphant (13:16):
Well, thank you for that that perspective. I'm,
you know, I'm sensitive to theto the fact that it in in your
role, you're trying to tackle arange of inequities that you see
in the field. What do you thinkare the priorities? I mean, when
you go to work every day, whatwhat what dragon are you gonna
slay next?
Sindy Escobar Alvarez (13:36):
Exactly. That that's a great question. So
so this is you know, it can aswe heard from the discussion
this morning, there are manyissues. Right? And where do you
put your energies?
Right? And I think as we evolveour thinking, something that we
that I think a lot about is whatare those places where our
(13:59):
support and not necessarilybeing dollars, but where we
convene a table, where we have adiscussion, or maybe we support
advocacy. What what are thoseopportunities where our it's
almost like a a match. Right?Like, our our input of energy is
a match that starts a fire thatfuels a whole, car or a whole
(14:19):
rocket ship.
You know? I it's because asfoundations, our dollars are
small. Right? So if we fill agap, then we are stuck filling a
gap in one place, and we're notreally changing the overall
condition. So so I think aboutthat a one of what is the bigger
opportunity that could reallytransform a system, and who are
those champions that can help usidentify, well, what are those?
(14:43):
Right? And I heard some ideashere today of, we can approach a
model, but how do we make it isthe word sustainability. Right?
So where where are thoseopportunities? We're we're not
talking about a patch, but,something that might be a
heavier lift or might be seen byby others as your approach might
be it's like a crazy idea.
(15:04):
Right? We're doing some crazyideas right now, but I'll follow
in some crazy ideas. But where
Grant Oliphant (15:09):
Well now, you know, I gotta ask you about
that.
Sindy Escobar Alvarez (15:11):
Yes. So we I think I'm attracted also to
difficult problems. So that andmaybe as a scientist, you know,
maybe scientists can relate tothis here that, we want to find
what was the right answer here.Right? And that that drives us.
Right? And so one of the forexample, one of the ideas that
we're pursuing recently thatcame up actually in conversation
today here is how do we thinkabout race and ethnicity in the
(15:34):
context of research and health?And how that has led to
inequities. Right? Just how wecommunicate about the
association of race with healthoutcomes.
How does this shape our thinkingand further stereotypes that are
harmful for equitable clinicalcare? And that's the idea, but
(15:55):
what we're actually trying to dois can we change research
practice so that we are morerace conscious. Right? So that
when I design an experiment, andencounter race as information, I
make best use of thatinformation in the context in
social context. Right?
(16:15):
So that as a researcher, wedon't further inequities because
there are examples where -sorry.This is abstract. Let me know.
Grant Oliphant (16:23):
This is I think this is exactly on topic.
Sindy Escobar Alvarez (16:26):
That, we think there's there's evidence
that as a research community, wemake inferences about race and
ethnicity that are really as asif they were related to biology
or outcomes in medicine and orthey relate to outcomes, but as
if they were related to biologywhen they're not. Right? They
might be indicative of anexposure that because of
(16:48):
experience of race in thiscountry, you you have a you, you
know, you're more likely to havea disease, for example, or have
x or y or z. But, the way inwhich research has used that
information in some cases hasnot been rigorous. Right?
We make inferences erroneousinferences about biology, but,
also, we have incomplete dataand we still make inferences
(17:11):
about race and ethnicity. Andthat has gone unchecked. Right?
And there there are tools ofmedicine that many of you
probably use every day, anywherefrom measuring kidney function
or pulmonary function tointerpreting neutrophil counts
that have an element ofrace in them. And we don't I've
(17:31):
learned all of these, and I findit fascinating because every day
I learn something new.
How we assess cognitive functionis normed by race. And so that
actually has implications forpatient care. Right? And so we
are trying to bring light tothat and to the research
community to say what checks andbalances can funders, you know,
(17:53):
not just nonprofit funders, butthe NIH, others can have in
place to make sure that that asa research community, we follow
rules that further equity.
Grant Oliphant (18:02):
Let's stay on this for for just a moment
longer because I, as I waslistening to you, I was
reflecting on the, kind ofbroken cultural moment that
we're in where discussionsaround race are suddenly
volatile in a way that can makeit difficult to discuss the
(18:26):
applicability in in variousdisciplines. And, you know, I'm
thinking, philanthropy has beenpaying attention to a lot of
cases around affirmative action,the Fearless Fund case, and, you
know, our ability to concentrateresources on particular
populations.
When you talk to people to helpthem understand why it's
(18:47):
important to look at race as afactor in better research, What
is the case you make to them?
Sindy Escobar Alvarez (18:55):
It's about better science and better
tools for medicine. I think itis and for health. It is about,
giving the treatment giving thehealth treatment that everybody
deserves and needs. Right?Because what we see right now is
because of how you look, becauseof how you you may self identify
(19:16):
or others may identify you interms of race, you may be
getting differential treatmentthat doesn't further your own
health, especially if you'reblack or brown in America.
And so it is a matter of healthcare and medicine medicine and
research serving equally orequitably, I guess, is it right?
(19:39):
Because right now, we are if ifI'm black, my and depending on
the hospital I go to in the US,it might be underestimated how
well my kidneys are functioning.And that may keep me from
getting care for kidneyfunction. Right? And so it is a
matter of of of of health forAmericans, you know, especially
(19:59):
those who have, experiencedunequal treatment for so long.
Grant Oliphant (20:05):
Thank you. I I just wanted to draw that out
because of how important that Ithink it is to keep saying this,
that the work you're doing, andthat so many of the scientists
we're privileged to fund and somany of the frontline clinicians
that we're privileged to fund aswell are doing is trying to be
(20:26):
sensitive to the special,communities and needs that
they're serving. And if you'reoblivious or blind to that, it
ends up being bad for everyone.So I just appreciate you're
you're really focusing on that.Let's talk for a moment about
caregiving.
Sindy Escobar Alvarez (20:44):
Yes.
Grant Oliphant (20:44):
Because I know this is an area you're focusing
on. So can you tell us a littlebit about what you're doing
there?
Sindy Escobar Alvarez (20:50):
Yes. So so we are, of course, you know,
we similar to to yourfoundation. So we are, building
a more creative, equitable, andsustainable future. So we think
of all all aspects equity. Whathow does it intersect our areas
of work?
And for caregiving, I thinksomething that we all
experienced or saw was really anvery visible during the height
(21:13):
of the pandemic is howunsupported caregiving affects
our productivity as individualsin our, you know, in our
professions, right, or in anyany activity that we have. It's
not the caregiving. It's thelack of support for caregiving.
Right? And that affects us.
And how we saw this very acutelyis that we supported physicians
who also do research. These arepeople that, at a minimum, they
(21:36):
have already 2 jobs. Right?They're doctors and they're
researchers, and they're alsopeople. And so what we knew
before the pandemic is that,women tend to fall out of- -and
this was in the context ofacademic research- that women
tended to fall out of theworkforce at higher rates,
earlier in their career.
(21:57):
Within I think it was somethingit's something like within the
1st 10 years of faculty facultyappointment, 40% faculty fall
out of workforce, and many ofthose are women. And there are
many factors. Right? We don't wedon't fully understand, but we
heard from from many researchersthat there was this comp another
happy word is their caregiversand that if they sometimes
(22:20):
research had to be cut out oftheir activities because they
had to show up to the clinicregardless. There were doctors.
And if they had a sick parent orsick child who had chronic
illness or, you know, they hadelderly parents, they also had
to take those hours. And soresearch was the one thing that
had to go. And so we thought,well, why don't we do an
experiment? Here's, again, youknow, our our research hats of
(22:44):
can we, prevent attrition, offaculty from research careers by
supporting identifying who arecaregivers and giving them
additional support for research.So it is we give you extra a
little bit of funds, you know,and, I mean, not enough to cover
a technician for a year or 2 sothat they could go on and be the
(23:04):
humans the caregivers they areor they were at the time and
have their research continue.
So, so we we found that this isa way, and and studied. We have
we gave a grant to a researcher,doctor Reshma Jagsi, who was
then at the University ofMichigan and has since moved to
Emory, who studied gender equityin academic medicine. And doc
(23:27):
she documented that thisactually helps change the
conversation at institutions.Right? So it's not just
addressing, need in the momentfor a researcher, but it helps
in the context of theinstitution change the
conversation from you are notreally committed to research to
we understand you're a caregiverand you deserve more support so
that we can continue to benefitfrom a science that you are
(23:49):
capable producing.
So that's that's how we havebeen supporting community.
Grant Oliphant (23:54):
It's a it's a wonderful initiative. And I, so
thank you so much for fordemonstrating the value of that
work. It leads me into thequestion of other ways in which
philanthropy can make adifference. And you know,
obviously, one of the notionswith private philanthropy is we
can invest in ways that aredifferent from government funds
(24:18):
and from business, where we cantake risks over a longer period
of time, etcetera, etcetera.Where do you think private
philanthropy or where do youwish private philanthropy would
do more work in this space topromote- to genuinely promote
community well-being?
Sindy Escobar Alvarez (24:37):
Well, so I am a little biased.
Grant Oliphant (24:40):
That's okay.
Sindy Escobar Alvarez (24:40):
I'll preface it with that. To come
back to your comment earlier,right, that there are areas
where we can go without fear.
Right? The the where we canreally bridge different
perspectives and try to find,solutions. I think something
that I wish we would do more ofis, recognize that research
(25:02):
happens in different contexts,not just in academic settings.
Right? And this is somethingthat we've heard here a lot
today that there's a lot ofopportunity, but where the
incentives are not there, whereI think that we will take it
it'll take many differentplayers, not just philanthropy.
But I think that what we asphilanthropy can do is try to
(25:22):
eliminate that there is this newfrontier of innovation, that
that there is possibility. Andmaybe if the opportunity and
possibilities aren't visible andclear, have those conversations
of how how do we eliminate whatwhat are the opportunities here?
You know, how essentially, beingthe ones that bring awareness to
(25:44):
the research communities andothers who need to be involved
to change our focus fromsick care to healthy care.
Right? And and working together.
I mean, I think sorry. That'sanother thing that I wish we'd
do more as philanthropy is,seeing where those opportunities
are that we may do thingsdifferently, but where we have a
common goal that we can elevateissues that are of societal
(26:11):
importance together. Right?Because I think that makes, a
bigger hopefully, it has biggerimpact.
Grant Oliphant (26:17):
Well, I I I love your framing of a shift from
sick care to healthy care, andthat one of the ways of getting
there is through this broaderlevel of collaboration that
philanthropy in theory can helpbring about. You know, I'll
confess. We have in this roomwith us a set of leaders who are
(26:38):
are bridging the worlds of beingin community providing care and
doing the seminal research thatis driving, progress forward
nationally and globally on onsome of the most pressing
issues- research issues of ourtime. And I confess that when
(26:59):
when we first had the idea,someone had the idea of putting
this group together, I thought,how's that gonna work? So we
don't we don't always naturallylean into putting groups
together, but why is thishealthy?
Why is this important for thesake of better medical research
(27:20):
and also better care?
Sindy Escobar Alvarez (27:22):
For many reasons. It is important for
many reasons. I think one ofthem is what we we truly
understand what are the what arethe hurdles, right, and where
are the opportunities. So someof the conversations that I
heard were, you know, how how dowe make data more accessible.
Right?
And, yeah, I'm looking at youhere. We saw a table of how how
(27:44):
does the data really flow withina hospital and health system,
and and what are the the hurdlesa researcher may have, for
example. So one of those arevery, very, like, in the weeds.
Right? So some of thoseopportunities.
But I think some of the largeropportunities are also to begin
to see that all of it isimportant. Right? It's not just
me understanding how a cell, youknow, regulates growth for
(28:10):
cancer is important, but is howdoes that really make it how
does the discovery makes its wayto the clinic? Or is that really
the as a researcher, I think Iit illuminates what are the real
needs that that clinicians havetoday. You know?
That maybe my efforts could beoriented even if in a little
(28:31):
way, you know, in a in a beginto to to be better informed-
inform more about what are theon the ground needs for
clinicians, for example. Soresearch that I think
understanding that there'sdifferent types of research that
I needed to move health is notall about discovering the new
pathway to develop a new drug.
Grant Oliphant (28:51):
Right.
Sindy Escobar Alvarez (28:51):
But that there are other problems that
really need our, intellectualcuriosity to move them forward.
I think that that is soimportant for these spaces to to
illuminate what are other typesof research questions that are
also important and that we needto put our energies to. And I
think for us as philanthropistsphilanthropies is how do we
(29:11):
elevate that as those ideas assome that need resources
nationally. Right? Because Ithink another conversation we've
had is how do funding modelshelp further those ideas or or
or not help.
Right. You know? So I think wecan carry that voice and say,
how can we change the fundingstructures? And maybe that's,
(29:34):
again, a difficult problem, butI don't think it's impossible.
Grant Oliphant (29:38):
Well, it's one we can actually maybe do
something about
Sindy Escobar Alvarez (29:40):
Yes. Exactly.
Grant Oliphant (29:42):
So, in terms of in terms of bridging the worlds
of of, community health carepractitioners and medical
researchers, what what would youhope to encourage, among these
among the folks in this room andthe larger community nationally
in those worlds? What do youhope to see more of?
Sindy Escobar Alvarez (30:03):
I hope to see more understanding that
health is not a collection ofdisciplines. Right? I think as a
research community, we may tendto see the problem only very
narrowly through, I'm asociologist or I'm a biochemist
or and it's true that we bringthat specialized knowledge, but
(30:25):
at the end of the day, we needto focus on the humans. Right?
That and what are you know, it'sso we have mental health.
Right? Is it an issue of it's anissue of the brain, or is it
environmental, or is it all? Andhow do we bring all of our
abilities around the problemrather than around my own career
or my own academic path or, orthe field of x or y or z? Right?
(30:50):
So I so I wish I'd we'd see moreof that centering around what
are the, somebody said on mytable, the outcomes we want to
see and the the the problem, andhow do we bring all of our
abilities to those.
Grant Oliphant (31:04):
So as you heard the conversation this morning,
among the leaders in this groupabout the challenges that
they're facing and theopportunities that they see.
You're looking at it from anational viewpoint where you've
talked with folks all around thecountry about this. Was there
anything that stood out to youin this conversation as
(31:26):
especially, emblematic of whateverybody is talking about? Or
and was there anything thatstood out to you as unique to
San Diego?
Sindy Escobar Alvarez (31:37):
That's a good question. And I have to say
we're starting to have thisconversation, so we hope that
others will join in in the forlater in the fall. But from what
I hear a lot of is recently isthe focus on communities as the
source of the information forwhat is important and what is
(31:57):
important now. I think that is acommon thread, of what I have
heard. And what is, unique toSan Diego, I think that there's
just all the the recognitionthat well, maybe this is I have
to say I'm coming from outsideof San Diego.
So, the recognition that thereare communities already here and
(32:18):
in this room that could, theycould identify together what is
it that's needed. I think thatis something that and and there
are unique, unique problems thatwe heard about related to the
nearness to the to the to theborder that we're seeing this
crisis of immigration, right,crisis, climate crisis. Right. I
(32:39):
think that's something that Iheard here today.
Grant Oliphant (32:42):
Great. Thank you. Well, this seems like an
opportune moment to turn to SanDiego for, for some questions.
What would you all like to hearfrom Cindy or from me?
Crystal Page (32:56):
And we have a mic just because we're recording.
Guest 1 (33:03):
Thank you so much for your insights. I was curious how
you go about engagingpoliticians and policymakers. I
just got back from a trip toCapitol Hill, for a
congressional life sciencesdemonstration. And I found it
enlightening. And, and veryinterestingly, I saw a lot of
(33:24):
young people working.
The staffers in DC are veryyoung people who are very eager
to learn more about science.They have mostly political
science backgrounds, but I foundthat very valuable to try and
explain the science to them, andthey were very eager to learn
it. So I wonder how you engage.
Sindy Escobar Alvarez (33:39):
Thanks for bringing that up. So I'm a
I'm a scientist, so I I am, verymuch in a learning curve on
that, and I think it's somethingthat philanthropy could do more
of, you know, engage with, and,of course, we have some
limitations, but I don't thinkthat, we have is entirely
exclusive. You know, we have to,find ways to to interact with
policy makers, But I think it'ssomething we need more of, and
(34:01):
what we need more of is alsothose of you who are doing the
work because I think, you know,I can say it from my, you know,
5th Avenue office where I readabout all the work that you do,
but where the the directexperience is is is so important
to put it all into context. Youknow, we have been talking a lot
about, at the foundation aboutnational funding, for health and
(34:25):
how that flows and what are thecultural barriers to changing
that. And I and I think that weneed examples.
Right? What does that look like?What does a different funding
ecosystem look like? And, whatare the real challenges? Right?
Or like we heard here is, youknow, we we can embed
researchers into federalqualified health centers, but
(34:47):
then the funding is gone. Sothose are such tangible examples
that I think we need more moreears to hear about. And then so
we we invest quite a bit morerecently in communications.
We're very, very keenly aware ofwho needs who who could hear
what is the message that we're,trying to spread and who do we
(35:08):
need to engage. So we do engagemore in, communications driven,
in in marketing and influencestep strategies.
Grant Oliphant (35:17):
I I think that's such an important point because
sometimes in philanthropy andand I think in in various
disciplines, we make anassumption that, oh, once we
know something, everybody willjust do it. Right? Right. And
and it's the last thing thathappens. You know, what we what
we actually have to figure outis when we know something, we
(35:38):
have to collect the data and wehave to we have to verify what's
true.
But then we have to figure outhow to tell that story so that
it's compelling in a way thatpoliticians have to pay
attention to and others as well.So thank you for that question.
I think the communications pieceis really important. Alright.
Other questions?
(36:07):
And if you wouldn't mindidentifying yourself.
Jimmy Figueroa (36:09):
My name is Jimmy Figueroa and I'm with TrueCare.
I have a question about thedevelopment of the sickle cell
treatment and the implementationat the community level. With,
our direct service providers,how has that process gone? What
have you learned? I know youmentioned a little bit, about
some of the challenges that,were not expected at the time.
Grant Oliphant (36:31):
And is it affordable? Is the treatment
affordable for our communities?
Sindy Escobar Alvarez (36:35):
Yeah. So those are good questions. And
and an example of how I thinkdifferent players interact with
the the issue different points,and, you know, where most of our
energies went to were, intodeveloping and contributing
research dollars to develop thattreatment, but where there are
real real challenges in access.I think the cost is estimated
(36:56):
something like $1,000,000 orsomething like that. It was
equal it's you have toessentially get a bone marrow
transplant plus the transfer ofedited cells.
Right? And it it is somethingthat is getting a lot of,
thought, I think, by people whoknow know a lot about these. One
example is the innovativegenomics, IGI, Innovative
(37:18):
Genomics Institute, I think,which is just north of here, at
UC Berkeley Mhmm. Headed byJennifer Doudna, who, was one of
the, you know, the discoverersof CRISPR Cas9. And as a
scientist, I think this is justa is such a great example of how
this group is thinking, not justabout how do we develop
therapies, but what models canwe build for commercialization
(37:40):
that take into account access.
Because right now, you have togo to a specialized center to
get my understanding is, to getthis therapy. And it is not
accessible to to everyone.Right? It's, because of cost.
You know, we have to insurancecomes into play.
So there are organizations thatare doing a lot around that. You
(38:01):
know, the American Society ofHematology has been looking at,
models for how to make this moreaccessible. And it is an example
of just having the cure wasn'tenough. Right? It isn't enough
to just have that.
Grant Oliphant (38:17):
Other questions? There's so much animated
discussion. There's gotta be acouple here.
Guest 2 (38:25):
Just curious as Do you guys choose what's important or
what questions to tackle. Canyou shed a little bit of light
on that process? And it's, like,who do you include in in those
conversations? Yeah. Because Ithink that's where you guys have
a lot of power of who you bringto the table.
(38:47):
So I was curious if you couldspeak to that.
Sindy Escobar Alvarez (38:49):
Agreed. And that's a that's a very good
question because, you know, wewe might just look at what's in
front of us. Right? Or what's infront of my computer, I guess, I
should say, or, or what our owninterests are or our own biases.
And and I think some of thatgrowth process in philanthropy
(39:10):
as a scientist is seeking outdifferent perspectives and
knowing we're engaged in makingsure that we're not just
listening to the same group.
Right? So, something that issomewhat new to us is we are
when we're exploring a new sortof frontier, you know, sometime,
in this case, the intersectionof, research and care, We're
(39:33):
doing it publicly. So we are weare setting out, and I'll be
happy to share that and maybeyou can distribute it to this
group, a request for proposalswhere we're really trying to
listen, you know, inconversations like this. What
are the important questions? Andwe started with a thought of
thinking with a thought of, isdo we share this with academic
institutions?
(39:53):
And as as we hear more of theseconversations, so that now
that's doesn't feel right.Right? I think it's it's on us
to to seek out differentperspectives, and it is it's
tricky.
Grant Oliphant (40:06):
Others. Yes.
Guest 3 (40:14):
Am I on mic? Yep. For a second. Before, but I am
fascinated by it, which is theuse of race and ethnicity in
clinical algorithms, since I Iwork on a project that's
essentially an implementationscience project with all the
clinical groups and FQHCs herein San Diego County about heart
attack and stroke prevention.And the number one tool we have
in our tool kit is the ASCVDwhat we call the ASCVD risk
(40:36):
calculator, which for those ofyou who don't know, calculates
your 10 year risk of having aheart attack and stroke.
It is meant to be used at apopulation health level. And one
of the factors that goes intothe little calculator, you can
all download the app and seewhat your own 10 year risk
score, is your race. And there'sbeen a little debate about that,
about whether or not it's age,sex, race, and then, like, your
(40:59):
cholesterol, your, bloodpressure, etcetera. And does
race belong in there or not? AndI'm really, really curious about
that and your perspectivesbecause we now know that all of
a sudden American HeartAssociation is changing their
mind, maybe, and saying racedoesn't belong in there.
And what is how do we thinkabout race in clinical decision
(41:21):
making? I think that's a reallyfascinating area where there is
a bridge very directly betweenthe work you're doing and
clinical care. So I'mfascinated.
Sindy Escobar Alvarez (41:30):
Yes. And and something very important you
touched on there, many things,is an organization that set
standards of practice, you know,of how that is perceived. Right?
They changed their mind. But Ithink that how we view this is
is a con science evolves.
Right? And science is exists inthe context of its time. And so
(41:53):
at the time, maybe that was thebest available information we
had. But now we know thatcategorizing people and you and
often isn't, like, 4 categories.Right?
You're white. You're black.You're Asian. What is the other?
I don't know.
Right? Is that really a way tocategorize human diversity? You
know, it's it's imperfect.Right? At the time, maybe he
(42:14):
gave us some information that wethought would make it easier for
a clinician to assess our 10year risk of heart disease.
But now we know that that's notthe full picture. Right? And so
we also know that how weincorporate race, as as I
mentioned earlier, can furtherstereotypes and can further
misconceptions about health andillness. And at worst, you can
(42:37):
actually change, theirrecommendation medical
recommendation for worse for thepatient. And so I think this is
an example where it's complex.
Right? Where the factoring in ofrace was being made to account
for a possible higher risk ofdisease in certain groups,
racial racially categorizedgroups. But there are other
examples where, there's nojustification for that and where
(43:00):
the factoring of race canunderestimate your likelihood of
having a a an illness. Andthat's when we get into trouble.
Right?
Where the consideration of racewas not helpful, and in fact, is
harmful.
Angelina Renteria (43:19):
Hello. My name is Angelina Renteria. I'm
with Indian Health Council, andI'm so appreciative that you
brought that up and for theadditional question here. And, I
I would like to make a commentand then a question, in terms of
research, race based researchand the impact in tribal
communities, for example. And,as a clinician, the interesting
(43:40):
way to navigate thatinformation, especially if it's
not fully understood by acommunity member, for example,
in native communities, we areone of the communities with the
highest prevalence of, and I'mnot going to name all of the
things, but diabetes, obesity,substance use, domestic
violence, and the list justcontinues.
And so in, creating anenvironment where we're
(44:03):
advocating for one's health, andalmost sort of trying to balance
out what the community hearsabout themselves, where they
have now this belief that I'mdoomed. And there's this really
fatalistic mentality that nomatter what I do, the likelihood
of me, you know, dying fromobesity, CKD. You you we again,
(44:30):
the list goes on. It's a uniquedance of how do we inspire,
staying ahead of the statisticand, for those that are really
making an effort to make surethat we steer clear of all of
these things that we're told arepreventable, is there an impact
there? Now we have additionalstressors.
I I'm more likely to have all ofthese things happen in my family
(44:52):
because of my race. You know,I'm I would really love to know
is there is there researchthat's studying the impact of
these things? And for those thatare active actively pursuing and
and trying to, you know, breakthe cycle of, I'd love to hear
more. You know, are thereopportunities to study this?
(45:13):
Because we are hearing from ourtribal communities who are
trying so hard to get ahead ofthe statistic and the stress
related.
You can clearly hear and feel itfrom those community members.
It's it's there. It's prevalent.Just I don't know if I asked my
question clearly.
Sindy Escobar Alvarez (45:29):
But Yeah. No. I I really appreciate your
your, I mean, expanding on howhow an inference translates into
what is interpreted and heard bycommunity. Right? And and this
is what we're hoping that the rewe can get to a point where the
research community does a betterwe all do a better job, right,
of how do we just because youhave an observation is is a real
(45:51):
observation, but it doesn'tdetermine it's not causal.
Right? It's it's not it's notbecause of your race. You know?
It is because of what your yourexperience of race has exposed
you to. Right?
And so, I think reframing thatis so important. There was a
recent paper, of researchers wholooked at, a brain bank of,
(46:14):
African American donors in theMaryland area. And they were
trying to study the, is is the,signaling in the brain, and this
is post mortem. Right? And theyhad disease like, cognitive,
degenerative diseases likeAlzheimer's and so on.
Is it different than a brain,that didn't have from a person
(46:36):
who have that disease? And atnatural conclusion in another
time, it might have been beingbeing, you know, if because
you're African American, yoursyou're x y z, you know, you see
that, there is this associationwith with race. But I think
knowing better now, you know,understanding the interplace
(46:57):
interplay of genetic molecular,you know, signaling and, and
exposure because of a racialgroup. You know, the the
conclusions are different andhow that was communicated of the
exposures, which arepreventable, have resulted in
this observation in in thisparticular cohort. And so to
(47:20):
report yeah.
So I think we can do betterabout communicating, and that is
not causal. Right? I think thisis this is one need to break
through of saying it's not, itis exposures that you have had
as a community and that arepreventable. Right? That that
hopefully is not yeah.
Grant Oliphant (47:36):
Alright. I think we have time for one more.
Guest 4 (47:44):
Thank you. My name is Razel Milo from University of
San Diego. There's a lot oftalks about artificial
intelligence. Do you see thatartificial intelligence as a
tool that we can use to bridgehealth equity?
Grant Oliphant (48:07):
I do based on on what I am hearing about, AI
tools that are under developmentin the health care space that
they are able, for example, toget past some of the cognitive
biases that humans bring. Sothey they're an additional tool
for practitioners to see pastwhat may be their own unseen
(48:31):
biases, and that may addresssome of these issues around race
specific treatments and theirapplicability. And so I think I
think it's hopeful in thatrespect. The downside is that
we've also seen with AI that thetools are only as good as
(48:52):
they're trained to be. And and Ithink getting the bias out of
the machine is gonna be anongoing challenge for for this
work.
But I think it has I do think itactually has great promise in
that regard. Would you agree?
Sindy Escobar Alvarez (49:07):
I very much agree. And I think it it
especially with biases, I thinkthis is a community that is
thinking of that, an equity fromthe start that there, there are
groups that are thinking of theethical implications and how to
get ahead of it so that we don'tfind ourselves to the problem we
have with these other clinicaltools where then they're
embedded in medicine and justcausing i trouble.
Grant Oliphant (49:31):
So on that hopeful note, I'm gonna ask you
a final question, which is,which is how you see the the
arena of, philanthropic fundingfor medical research and
caregiving evolving over thenext decade. What does Doris
Duke, think is the is the art ofthe possible over the next
(49:54):
decade?
Sindy Escobar Alvarez (49:56):
Well, we really think we need to work
together. So I imagine in 10years, philanthropy will look
different where we are, movingbeyond the individual missions
to our common sharedunderstanding of problems and
applying our missions to commonground. Right? Where, we have
(50:19):
moved beyond this perennialdiscussion of do we need
research a or research b? No.
We need it all. And how do weget how do we really put our
energies into furtheringresearch that's important and
elevate the prestige of that,which is not currently
(50:39):
considered the what what isgoing to give you a Nobel prize.
Right? I think we I hope that in10 years, we have changed
chipped away at that of what isprestigious research to what is
important research to pursue.
Grant Oliphant (50:52):
I think that's a beautiful vision. So on that
note, Sindy Escobar Alvarez,thank you so much for being here
for this conversation andcontributing so much, and to
our, our leaders in the room aswell, thank you for being part
of the conversation.
Popular Podcasts
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Therapy Gecko
An unlicensed lizard psychologist travels the universe talking to strangers about absolutely nothing. TO CALL THE GECKO: follow me on https://www.twitch.tv/lyleforever to get a notification for when I am taking calls. I am usually live Mondays, Wednesdays, and Fridays but lately a lot of other times too. I am a gecko.
The Joe Rogan Experience
The official podcast of comedian Joe Rogan.