Episode 136
How to Provide Better Medical Care in Our Communities w/ Dr. Panagis Galiatsatos
Dr. G is a pulmonary and critical care medicine physician at Johns Hopkins School of Medicine. He is an expert in the diagnosis and treatment of obstructive lung disease, tobacco cessation, and in the care of critically ill patients in the Medical ICU. He is a member of the Obstructive Lung Disease Group at Johns Hopkins, oversees the Tobacco Treatment Clinic and provides teaching to medical students and residents at Johns Hopkins.
He is a renowned Ted X speaker with his work for Medicine for the Greater Good which is a team of physicians, students, & change-makers at Johns Hopkins on a mission to “know the science, know the patient, and know the community, promoting health outside the confines of the hospital environment and understanding socioeconomic barriers to health.
Dr. G is also one of the doctors on my team at JH for my genetic condition called HHT which causes malformed blood vessels in the body in multiple organs.
Transcript
Dr.
Speaker:Panagis Galiatsatos or Dr.
Speaker:G is a physician, researcher and educator at Johns Hopkins university
Speaker:located in Baltimore, Maryland.
Speaker:His new initiative medicine for the greater good it's designed to get
Speaker:doctors and clinical practitioners outside of the confines of the hospital.
Speaker:His goal is to get them to get engaged in the community and other socioeconomic
Speaker:diverse groups to understand how their environments impact their health.
Speaker:Dr.
Speaker:G was greatly involved in the COVID pandemic assisting others
Speaker:as well as bringing cancer screenings to the local community.
Speaker:Dr.
Speaker:G's work with medicine for the greater good has got him featured as
Speaker:a TEDx speaker, as well as featured in major national news networks.
Speaker:In addition, he is also my personal doctor with a rare genetic disorder that
Speaker:I have HHT with blood vessels, that form in my body where they're not supposed to
Speaker:his work with genetic disorders is also to understand how socioeconomic diverse
Speaker:groups can get rare genetic diseases treated faster and detected earlier.
Speaker:So please enjoy my conversation with Dr.
Speaker:G on medicine for the greater good here on the business samurai podcast.
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Speaker:Sit back, enjoy, and welcome to the business samurai podcast.
Speaker:I am your host, John Barker.
Speaker:Dr.
Speaker:G it is awesome to have you here you work at probably one of the most
Speaker:renowned institutions in the country.
Speaker:If not in the world at Johns Hopkins you're out there in the community a lot.
Speaker:How would you rate us as a society on how our health stands and how we're
Speaker:treating things just in general?
Speaker:Yeah, no, I'll take a very us centric approach to it.
Speaker:I think we have all the tools for health, all the things that we need in order to
Speaker:promote health and keep in mind, health from my standpoint means, yeah, we're
Speaker:functioning at a high level where we can just of achieve our own best potential.
Speaker:If we don't have health holding us back, we have a lot of those tools to
Speaker:help from curative to accommodation.
Speaker:The biggest challenge that we have is just, they're not distributed equally.
Speaker:And there's a good portion of populations who disproportionally
Speaker:feel unhealth issues.
Speaker:A lot of 'em really generated from their own, not their own, but generated
Speaker:from social structures and so forth.
Speaker:So I think, we have all the right tools.
Speaker:We could do better to have equitable health outcomes throughout the.
Speaker:What would you recommend, as I know you started the, what's the name
Speaker:of the the program for the greater good made it for the greater good.
Speaker:And I've got it up on the other screen over here.
Speaker:What it, what would you recommend to start getting out and start making those
Speaker:improvements to make it more equitable for everyone, in the population base?
Speaker:Yeah, no.
Speaker:So from my standpoint, this it's a great question.
Speaker:I get this asked all the time.
Speaker:You're like how do you achieve health equity?
Speaker:And first things first, I think we have to realize it's not gonna be from a hospital.
Speaker:We, we practice medicine, we don't practice health.
Speaker:And I don't see that at all to put down our profession.
Speaker:I love my profession at the same time, we have to recognize
Speaker:we're very reactive, right?
Speaker:We're gonna find diseases.
Speaker:We're gonna try to treat those.
Speaker:Maybe not necessarily abnormalities.
Speaker:And so from that standpoint, you can't wait for a hospital to be the
Speaker:leveler of health equity throughout.
Speaker:Throughout a society, throughout a neighborhood, throughout a
Speaker:city, what I would love, right?
Speaker:If someone's Hey, what's your best answer to achieve health equity?
Speaker:It's that it's, it would occur if every social entity was held
Speaker:accountable for health outcomes, right?
Speaker:School systems, not just grades health outcomes, transportation, health
Speaker:outcomes, housing, health outcomes, right?
Speaker:If they all felt that notion of account.
Speaker:Is your housing doing enough to keep people healthy, right?
Speaker:Meaning up to date with good air flow, air quality, no mold in the
Speaker:buildings and so forth transportation.
Speaker:Is it accommodating?
Speaker:Can you get to it?
Speaker:Is it easy to access, right?
Speaker:Is it disproportionately effective in one area?
Speaker:Not in another, if every notion of social of the social fabric of what makes us
Speaker:humans failed accountable for the health.
Speaker:That would be transformative.
Speaker:That would be revolutionary.
Speaker:And I see this cuz that's what we would need hospitals.
Speaker:Aren't gonna achieve.
Speaker:The hospitals are good levelers of health equity once you're in there.
Speaker:But then you're gonna go back out to the same factors that resulted in
Speaker:those health disparities to begin with.
Speaker:Now that's something I saw within your TEDx talk and with reading about
Speaker:the program that you've got, it was.
Speaker:Doctors practitioners, it's, the environment has just as much
Speaker:bigger play, but what did you have?
Speaker:Like an aha moment where it was like, Hey, we need to go beyond the bounds
Speaker:of the facility and the practice.
Speaker:Was there a particular patient without, obviously without divulging anything, but
Speaker:was there like, hang on a second, we need to, this there's a trigger point here.
Speaker:We need to come at this problem in a different
Speaker:way.
Speaker:From my standpoint, it was, this is where, I had.
Speaker:Medical school training, starting off as an intern at Hopkins supplemented.
Speaker:With my years of just living in Baltimore city, I actually, where I'm speaking to
Speaker:now my office, the window overlooks my community that I grew up in am I aha.
Speaker:Moment king coming back to this hospital being like all this is
Speaker:where I train I'm back here and just realizing it was really that,
Speaker:those moments early and entering year, July of in August, I'm sitting
Speaker:here, I'm like I got 200 grand worth.
Speaker:Information and you can use it, but it's not enough.
Speaker:Science is, it's a string of objective facts, right?
Speaker:It's it doesn't align with a culture.
Speaker:It doesn't align with an identity.
Speaker:And I see this, not again, not putting down science, but people, my belief,
Speaker:people want to feel a sense of purpose.
Speaker:And they'll align that sense of, and drive a purpose with maybe a religion,
Speaker:maybe a work, wi with their family.
Speaker:. And so when science dumps out all these facts, people are gonna look to
Speaker:see how does this align with who I am?
Speaker:And that's my aha moment.
Speaker:Really?
Speaker:I'm seeing this now years after my intern year, a little bit
Speaker:more succinct, but that's what I was having with each patient.
Speaker:As doctors, we try to persuade them why they need to take medications and so
Speaker:forth, unless them have some cultural humility, won't win them over and.
Speaker:That to me was the big gap.
Speaker:And I say this because when I would work with these patients in my intern year,
Speaker:these weren't my, these weren't patients.
Speaker:These were my soccer coaches, my aunts and uncles.
Speaker:These were neighbors, et cetera.
Speaker:And I'm sitting here listening to people, talk about the diabetes and
Speaker:I'm like, oh my gosh, like you, you gotta understand where they shop.
Speaker:You gotta understand what they're eating.
Speaker:You gotta understand their culture.
Speaker:You're asking 'em to cut out things that are traditional dishes.
Speaker:That's not fair to them.
Speaker:You're copying pasting things, mitigating.
Speaker:What means for them to be a human being.
Speaker:. And so that, to me, it was many of patients with aha moments.
Speaker:It wasn't one.
Speaker:Now reflecting back on it, it was a ton and this is again,
Speaker:not every patient or not.
Speaker:Every provider needs to practice at the hospital they came from,
Speaker:but they need some level of culture humility to understand
Speaker:that science is much more complex.
Speaker:Medicine's very much complex.
Speaker:And how you align it with patient's interests.
Speaker:That should be the.
Speaker:To me, it's like paint, playing music, no musician goes and plays every single
Speaker:note when you'd get a cacophony out of that, your audience, you put together
Speaker:three or four notes, you repeat them, boom, you won the audience over same thing
Speaker:with physicians and science and so forth.
Speaker:How we message and send out those kind of information in messengers to deliver.
Speaker:You gotta know the community.
Speaker:You have to know where people are coming from, and then you can begin to have
Speaker:these conversations of winning them over.
Speaker:And that's where community engagement in my opinion, getting
Speaker:doctors bedside into the community.
Speaker:That's why we created it.
Speaker:That's why we do what we do.
Speaker:I, and I found it pretty interesting listening to, to, to you talk
Speaker:about when you first started going out into the communities and you,
Speaker:I believe it was breast cancer screening you talked about, and it
Speaker:was like the community was resistant.
Speaker:Maybe they didn't have that, that access to the hospital to you.
Speaker:Like maybe I do, or some other people, and you're like, Hey, come do this, but
Speaker:they didn't wanna be viewed as a patient.
Speaker:So how long did it take when you said, all right, we've got, we've
Speaker:got medicine for the greater good.
Speaker:We need to go get some community involvement, understand the environments
Speaker:they're coming for to build that trust up where it was becoming that the help
Speaker:that they needed and that you wanted to provide really started to come
Speaker:together and start to get integrated.
Speaker:That, that's a great point right there.
Speaker:That, that was the other eye-opening thing.
Speaker:People don't want to become patients, being a patient is hard.
Speaker:It's frustra frustrating, and it's not like I want them to live in ignorance, but
Speaker:there's a way to deliver this messaging in order for people to understand.
Speaker:No, it can align with my calls.
Speaker:It can align with my identity when we wouldn't have to do these free
Speaker:mammogram screenings a decade ago.
Speaker:All we did was just plant ourselves here.
Speaker:Ah, we got mammograms, no one came.
Speaker:We didn't talk to them about what this could mean for their lives.
Speaker:They saw this as a way, honestly, many of them, one, one thing I
Speaker:didn't share in that talk was many of them saw this as like a capitalist
Speaker:ploy to get money to the hospital.
Speaker:It's that's not at all.
Speaker:Here's a good intention that had unintentional
Speaker:consequences perceived as bad.
Speaker:I'm telling you if medicine is really meant to be part of the fabric of
Speaker:a community needs to start acting like it's a member of the community
Speaker:needs to start acting like it's out there talking with people, engaging
Speaker:with people, you gotta get your doctors and your nurses out there.
Speaker:And this, yeah, it's gonna mean like where do we find a time to me?
Speaker:It means reshifting what it means to be a C.
Speaker:We provide care for these human beings.
Speaker:We gotta know where they're coming from.
Speaker:Why is the same patient coming in and out of the hospital with
Speaker:the same asthma exacerbation?
Speaker:When you go to the house we find it's covered in mold.
Speaker:Ah, here's your Eureka mode.
Speaker:All right, fine.
Speaker:We'll move them out.
Speaker:Okay.
Speaker:Who's then who are you moving in?
Speaker:You're not, you're just moving the problem around.
Speaker:Let's talk to housing.
Speaker:Let's see if we can make them feel accountable and just
Speaker:shift the economic look we're.
Speaker:Everything we've created that has this impact is manmade.
Speaker:And so we can UN man make it.
Speaker:And we just gotta redefine what it means to live and try to achieve health equity
Speaker:from a social standpoint, that way even human beings don't perceive us as trying
Speaker:to make them patients, but perceive us as we want to try to keep you healthy.
Speaker:That's it.
Speaker:No.
Speaker:And I think that brings up something, cause I've read the
Speaker:articles over the years, man.
Speaker:I'm like an orthopedics nightmare or dream besides my HHT stuff, which
Speaker:we'll get into a little bit later with many of the stuff that I've had.
Speaker:But do you think that the way that the system is structured now, the patients
Speaker:seem more as a, there are product to come in there, and that's what some of that
Speaker:resistance was because I know when I went in for stuff, I've had two knee surgeries,
Speaker:multiple soldiers you get mystery bills in there and you're always worried, it's
Speaker:that thing of, oh, I don't know what I'm gonna get because it's not really health.
Speaker:It's seen by a product by the corporate entity, not the doctor's necessary,
Speaker:but the corporate entity that's overseeing this stuff or insurance
Speaker:companies.
Speaker:Yeah, no.
Speaker:And from my standpoint, that's, again, it's redefining how health
Speaker:is distributed and so forth.
Speaker:And if we really look let me rewind a little bit, physicians, what
Speaker:I'm sitting here and telling you.
Speaker:if we traveled we did a little time traveling.
Speaker:I'm looking for the button here.
Speaker:I don't think there's a time travel button.
Speaker:And we went back to the age of Boies, Hippocrates even yeah, that's
Speaker:this is what doctors do, right?
Speaker:Every, big cultural movement.
Speaker:Especially those driven by faith from Judaism to Islamic faith, people
Speaker:that were identified as doctors.
Speaker:Didn't hide.
Speaker:Didn't sit in an, their clinical walls there, there wasn't you went out.
Speaker:Meaning what I'm alluding to is the definition of what a physician meant
Speaker:over the last thousand years was this I'm not doing anything revolutionary.
Speaker:It's just revolutionary to our ears.
Speaker:Cuz the practice of medicine has changed in the last 100 years, right?
Speaker:Yeah.
Speaker:We have the great sign that don't get me wrong, but how we implemented,
Speaker:how we tackle it and how we've created our own disconnect from.
Speaker:that's new to us, right?
Speaker:That's new to this profession.
Speaker:If we really go back to the roots of how physicians came to be and how they
Speaker:were perceived and how they were actual community members, it will change.
Speaker:There's there's a physician whose name is on the declaration of independence, right?
Speaker:Dr.
Speaker:Benjamin.
Speaker:And that's how he practiced.
Speaker:He was a psychiatrist.
Speaker:He went out into the community.
Speaker:He made it clear.
Speaker:You gotta know where people are.
Speaker:Here I'm like this.
Speaker:Again, he didn't say anything revolutionary.
Speaker:He just did what the notion of a physician was over these years.
Speaker:Cuz you wanted to find the Genesis of the pathologies, right?
Speaker:Where are they really coming from?
Speaker:Where's this cholera outbreak coming from where's this cul outbreak coming from.
Speaker:You wouldn't know unless you went out in the community.
Speaker:And yeah, we have good public health officials to help us, but that shouldn't
Speaker:be a doctor's excuse to say I shouldn't step out into the community and hear
Speaker:what their health interests are.
Speaker:What's going on in the back of your.
Speaker:Yeah, it's I get, there's a capitalistic conversation to this and that, this is
Speaker:fine, there's economies and so forth.
Speaker:We've gotta hire people.
Speaker:I get that, but it shouldn't come at a sacrifice from doing what is
Speaker:at the ethos of being a physician meant for thousands of years.
Speaker:no, and I think that goes back and I don't know if it's true, cause I never
Speaker:live in era where you talked about maybe doctors being like said out in
Speaker:the community, but I just watched an old Western and it's I gotta go get
Speaker:the doctor and bring 'em to the house.
Speaker:That stuff where they were talking about doing house calls and knowing the people
Speaker:that were around, but with the initiative that you're doing, is this something that.
Speaker:It's just been local in Baltimore, or are you trying to influence other
Speaker:regions, other larger institutions to start implementing this and using what
Speaker:you're doing at Johns Hopkins as a model?
Speaker:Great question.
Speaker:First of all, you gotta prove it's worth here in the last decade of doing this.
Speaker:I think we've done that pretty faring succinctly.
Speaker:And you now what I can wave my hand at is look at what we did during the pandemic.
Speaker:The communities that partner with us more than 90% of their
Speaker:congregants tenants got vaccinated.
Speaker:And if you talk to them, it's because we partnered and collaborated with
Speaker:them in order deliver to deliver that message in a manner that
Speaker:aligned with this community, right?
Speaker:It's not us wanna have like saves you lives.
Speaker:We DIDNT go and give grand round presentations.
Speaker:We went, we spoke for about 10 minutes.
Speaker:The I mom came up, quoted the Quran.
Speaker:Why the, teachings from the cran meant to get the vaccine life was, life was good.
Speaker:People agreed.
Speaker:. And so it's taking me a decade to understand the complexities of this.
Speaker:A lot of it's also been humbling.
Speaker:A lot of it is really realizing people don't really need doctors so
Speaker:much, as you need them to advocate, you need them to scream out loud
Speaker:for them to partner with them.
Speaker:We can't walk in their shoes, but gosh, darn it.
Speaker:We can walk next to their shoes as they go through these struggles.
Speaker:And.
Speaker:I think every healthcare institution, every healthcare system can take
Speaker:on very similar models and it needs to a 100% needs to, because
Speaker:as we solve what happened to the pandemic, we rely on patients, to
Speaker:take on the proper measurements.
Speaker:So they don't get sick and overwhelm a healthcare system.
Speaker:And your patients can only do that.
Speaker:If you have great medical messaging, that's part of the fabric of a community.
Speaker:So full disclosure.
Speaker:And actually probably announcing it here in your podcast.
Speaker:I have a book deal 2023 will be our book medicine for the greater good,
Speaker:which will lay out that foundation.
Speaker:How can every person do this?
Speaker:I can, every healthcare system do this and I'm hoping it's not seen
Speaker:as an evolution or a revolution.
Speaker:Shouldn't be, it just means, Hey, we're going back to the, our roots.
Speaker:This is what we.
Speaker:This is how physicians were always seen in a community.
Speaker:And we need to go back to that because in my opinion, we got
Speaker:the, we got great science.
Speaker:Let's just make sure it actually makes the impact on every population out there.
Speaker:No, that's awesome.
Speaker:And congratulations on the book deal.
Speaker:I'm glad you brought up the pandemic.
Speaker:Cuz I wanted to talk about that for a little bit as, as far as building
Speaker:trust within the community, I feel like this was obviously something
Speaker:that was, it was politicized.
Speaker:I feel like I'm pretty I wanna say me personally have usually
Speaker:been good about weeding out.
Speaker:Hey, somebody's trying to project their opinion to guide somebody
Speaker:to a direction versus actually here's the objective facts.
Speaker:And there was obviously it just became so much noise out there when
Speaker:the pandemic, and then, you were into your, whatever this year is now
Speaker:through three, two and a half, three.
Speaker:Truth from fiction.
Speaker:How much of what was going on in the news nonstop affected your
Speaker:ability to provide treatment.
Speaker:And then after we go through this, I actually have a couple
Speaker:specific questions that I still today don't know the answer to.
Speaker:Yeah, no.
Speaker:And again, the, to me the ugliest thing about the pandemic was for many of us.
Speaker:Many of us who knew and others who were just like, wow, like Francis
Speaker:Collins, director of was like, I didn't realize people were just
Speaker:not gonna believe us about this.
Speaker:And I'm like, if you're not out in the community, of
Speaker:course you would not know this.
Speaker:Of course, like again, science, some way shape reform.
Speaker:We have isolated ourselves, right?
Speaker:We have made, our, we have our own gospels and our own Qurans and our own tour.
Speaker:We have our own books, but we don't preach them.
Speaker:We don't go.
Speaker:and discuss it with the community so they can understand what's going on.
Speaker:Even though Hey NIH, don't forget.
Speaker:It's taxpayer bills and, funding that comes to us.
Speaker:So to me, the ugliest part of the pandemic was that was full front
Speaker:of how disconnected people were from their ability and desire
Speaker:to work with us and collaborate.
Speaker:There wasn't a single scientist or physician out.
Speaker:That wouldn't need to strip people of any freedom.
Speaker:No more than a meteorologist wants to strip you of your freedom
Speaker:when he, or she's discussing there's a hurricane coming.
Speaker:You're telling me I gotta leave my home.
Speaker:No, I won't.
Speaker:All right, man.
Speaker:Fine.
Speaker:Stay let the hurricane come.
Speaker:Like I wanna tell you from my standpoint it was the same thing.
Speaker:We were just, we trying to put out a call.
Speaker:We saw a virus we've never seen before we saw what it was doing in certain regions.
Speaker:Overwhelming their hospitals.
Speaker:Yeah.
Speaker:We took some extreme measurements in the beginning cause we just didn't know.
Speaker:Same thing.
Speaker:When a hurricane's coming, you labeled it as a category five, and then last
Speaker:second, if it deviates, you're not gonna be like, oh, that meteorologist lied.
Speaker:No, we're making the best hypothesis with the data we got to protect you.
Speaker:And you know what?
Speaker:You can yell at us while you're alive with each breath you take, cuz you know what?
Speaker:There was some probably, realization that it did play out in a manner that we said.
Speaker:And so from my stand.
Speaker:, that's what we wanted to go out.
Speaker:That's what we wanted to go and say.
Speaker:And the fact that so much disconnect happened, it wasn't because of, it
Speaker:was because of a variety of things.
Speaker:One us lacking in the ability to really make sure that we plant the
Speaker:appropriate seats to be seen as part of the forest of the society.
Speaker:The fabric of it, we lost that capability and then we suddenly entered and we wanted
Speaker:to talk and the community's not stupid.
Speaker:Many of them were like, oh, now you want to talk to us cuz we're
Speaker:overwhelming your hospital.
Speaker:Where were you years?
Speaker:Two, there were other people who had their own bias who
Speaker:had their own gains from this.
Speaker:And again, this isn't the first time we saw this happen with science, right?
Speaker:We saw this, for instance, 1950s, all that we culminating to the
Speaker:1964, us surgeon general report, right from us surgeon general, we
Speaker:discussed smoking causes cancer.
Speaker:And that should have been, if you thought science was that great that
Speaker:people would accepted, you'd be like that's it nail on the coffin.
Speaker:This product will stop in 10 years, still around 15% of the population still smokes
Speaker:and a massive Genesis of probably new patients in the future will come about
Speaker:because of the electronic cigarettes.
Speaker:And there the youth usage epidemic we see in it, we didn't win anyone over.
Speaker:There's other people fighting that science mitigating it and doing it in a way.
Speaker:You know that.
Speaker:Yeah, it's deceitful.
Speaker:Of course it is.
Speaker:It's frustrating.
Speaker:Sometimes it's pain.
Speaker:But it's also painted in a manner that people can understand these simple
Speaker:narratives, I'll call them back.
Speaker:Science need to figure out how to do that same similar messaging.
Speaker:We need to figure out how to constantly have a voice out there, because if
Speaker:we're not that consistent, there's others who are, and they're gonna
Speaker:keep letting people over that to me is what the pandemic really revealed.
Speaker:It revealed that we are poor communicators of the insight that we.
Speaker:We gotta begin to model ourselves, and this is not meant to sound
Speaker:religious, but we gotta model ourselves, look at faith, right?
Speaker:Not all of them, a good portion of them have their own apostles and disciples to
Speaker:go out and discuss what that faith is.
Speaker:We need to do same thing with science and medicine.
Speaker:We need to have our own.
Speaker:Disciples going out there discussing what we have found and accomplished that way.
Speaker:People not only believe us for the next public health crisis,
Speaker:but things like climate change.
Speaker:I was in a San Francisco a while back ago and went to Napa valley.
Speaker:And every vineyard there was discussing how climate change
Speaker:was impacting their crops.
Speaker:It's impacting their business.
Speaker:They're like, we're not very denying the signs.
Speaker:It's right there.
Speaker:We got the data coming in ly so we need to figure that out.
Speaker:That to me is a, should be as emphasized and prioritize as
Speaker:anything else we do in medicine.
Speaker:How much do you think with the way society wants and this
Speaker:piggybacking on what you just said?
Speaker:Society is used to having instant answers.
Speaker:I can get anything delivered to my house within an hour, within a day.
Speaker:And then when you have a new, the new virus that comes out there, it takes
Speaker:time to do the scientific research.
Speaker:It takes time to go get it.
Speaker:Peer reviewed by multiple labs across the world.
Speaker:And then as people are figuring out, this is new.
Speaker:Yes, the data points will change and evolve as you get more of it.
Speaker:And then you start looking for patterns.
Speaker:How much do you think of what happened is just quite frankly, the public in general,
Speaker:looking for instant answers immediately, and then not used to the rapid change.
Speaker:As more data points were being discovered.
Speaker:Spot
Speaker:one.
Speaker:We, scientists physicians need to do better to improve the science
Speaker:literacy of, of EV every American.
Speaker:I'm serious, cuz like if people understood that and people would
Speaker:understand, yeah, I get it.
Speaker:Dr.
Speaker:G is saying right now, March 19th, 2020 may change by, tonight and I,
Speaker:personally, like I can recall to my own conversations I was doing that.
Speaker:I was saying, Hey look, I'm giving you the best information happen
Speaker:now could change by tomorrow.
Speaker:We'll find out science is incredibly humbling.
Speaker:It's not that you're wrong.
Speaker:You're making the best calculated decision based on the data
Speaker:that you have at that moment.
Speaker:If you wanna paint it out and it's binary black and white right.
Speaker:And wrong.
Speaker:That's, it's unfair to a profession where our job is to learn in real
Speaker:time and do the best that we can.
Speaker:There's a pace to it.
Speaker:The challenges of public health crisis, like a pandemic, changes that pace and
Speaker:puts us to make decisions in real time.
Speaker:And there's no Monday morning quarterbacking where you.
Speaker:Maybe I would've done B and C.
Speaker:It's great.
Speaker:This isn't a sports game.
Speaker:We can't like redo it for the next one.
Speaker:We're doing the best we can with in real time.
Speaker:But with my stamp, from where I'm coming from is if we did a great
Speaker:job of medical messaging of science messaging, people, would've known
Speaker:that I'm like, Hey, you know what?
Speaker:They're gathering the day they have now.
Speaker:And they're giving us the best decision they're giving us
Speaker:the best insight right now.
Speaker:And it's, I'm sitting.
Speaker:We have like meteorology tools that can predict the weather like 14 days later.
Speaker:But I promise you if someone looks at the weather map now and is like, all
Speaker:right, two weeks, it's supposed to rain.
Speaker:And then right a day before that, they're like, oh, it's no longer raining.
Speaker:I could look back.
Speaker:And that guy was wrong two weeks ago.
Speaker:No, they understand the data they have now that they collected.
Speaker:They're making the best hypothesis.
Speaker:And of course, proximity is gonna be key to understanding if that
Speaker:hypothesis will play out or.
Speaker:and so we need to do a better job to make sure people have a good basis of
Speaker:scientific literacy, not to make them scientists, but just so they can have a,
Speaker:just like people have financial literacy.
Speaker:You're not gonna become a CPA.
Speaker:You're just gonna know how to manage money to some extent.
Speaker:So that to me, we need a, we need and should have done a better job with,
Speaker:and not just during the pandemic throughout just life in general.
Speaker:so I'm gonna ask two.
Speaker:COVID questions about what the public was asked to do, just because there was
Speaker:so much noise around it to this day.
Speaker:I still don't know what is true or not.
Speaker:And like I said, I try to go find the white papers from places.
Speaker:But as my camera goes nuts, do cloth masks make a difference in
Speaker:the spread and community spread?
Speaker:All right.
Speaker:So I will say this.
Speaker:So we're gonna, we're gonna scale this up a little bit.
Speaker:Masks versus no masks.
Speaker:Just that binary of evaluation masks work.
Speaker:Yes.
Speaker:Okay.
Speaker:Now you're spot one.
Speaker:It's a type of mask and the situation you're about to put yourself into,
Speaker:I say, I'm gonna run into a C to pick up my medication that a note's
Speaker:waiting at the pharmacy I called.
Speaker:They're like it's right there.
Speaker:Just grab and go.
Speaker:It's paid for grab and go.
Speaker:You gotta grab and go.
Speaker:I'm gonna be in there for minutes.
Speaker:Pretty fast.
Speaker:Dodging weaving, grab and go cloth masks is fine for that situation.
Speaker:So meaning the masks you want to use, you just have to know what
Speaker:you're using them for, right?
Speaker:The situation cloth masks.
Speaker:I think if you're gonna go in a setting that you probably be there in less
Speaker:than 10 minutes, it's perfectly fine.
Speaker:If everyone else is wearing cloth mask probably can double that time.
Speaker:20 minutes maybe.
Speaker:So from that's standpoint, that's how I strategically think of it.
Speaker:Like I'll grab a cloth mask quickly cause I know I'm going in and out now with
Speaker:that said, you know what, if it started raining and now I'm stuck in the store.
Speaker:Now I'm wishing I had a bit mask scaling that up surgical mask also again.
Speaker:Great.
Speaker:But you gotta know for the right setting, I wear it in front of certain
Speaker:patients that I know aren't infected and I'm feeling good and I'll wear it.
Speaker:And I know I'm gonna be in there with them less than an hour.
Speaker:I'll.
Speaker:Feel, I feel pretty confident in it.
Speaker:Now the ones that are 90 plus, right?
Speaker:The can 90 fours, the N 90 fives.
Speaker:Those I'm wearing.
Speaker:When I know I'm gonna be there for quite some time hours, or I'm
Speaker:gonna really become face to face with a patient who's got active.
Speaker:COVID spinning that out on me as I'm shoving a breathing tube in there.
Speaker:So sure.
Speaker:All the masks work, you just need to know the setting you need to wear.
Speaker:That's it's like choosing clothes, right?
Speaker:You're not gonna throw in a jacket at 90 degree weather.
Speaker:That's a little overkill.
Speaker:I'm not gonna wear an N 95 when I'm like about to run in for a few seconds,
Speaker:a overkill to my opinion, but we'll wear a cloth mask for those settings.
Speaker:So they work.
Speaker:You just need to know the setting.
Speaker:You're about to put them in.
Speaker:Gotcha.
Speaker:And the second question is related to vaccines and
Speaker:talking about personal choice.
Speaker:So I had a lot of friends of mine.
Speaker:I have one person I know who actually lose their job.
Speaker:I refuse 'em to get the vaccine.
Speaker:And the company was trying to make it a requirement to be employed there.
Speaker:And then I just had some others just refuse to do it.
Speaker:And my understanding of the vaccine is it does not.
Speaker:It protects you.
Speaker:It protects you.
Speaker:If you get sick, you're not going to die.
Speaker:The symptoms hopefully will be lessened.
Speaker:That's my understanding of it, but it does not prevent.
Speaker:what is, what was the kind of the medical reason to start having these local
Speaker:governments and state governments, even the medical, this part, I don't know to
Speaker:go, Hey, we need to require the vaccines.
Speaker:Even though it doesn't necessarily prevent community spread, unless I am absolutely
Speaker:completely wrong on that, please.
Speaker:Correct me.
Speaker:Yeah no.
Speaker:So you're spot the vaccine that we created was not its job was to prevent
Speaker:severe COVID and it did just that.
Speaker:Prevented severe COVID.
Speaker:We got a great vaccine to achieve that.
Speaker:And from that standpoint, the reason why we wanted prevent severe COVID for
Speaker:instance, right now there's another bad, another virus corner, a monkeypox yep.
Speaker:You do not see at all us with that same sense of urgency that we
Speaker:have with COVID there's a specific reason for that COVID took away.
Speaker:A part of a functioning society, your healthcare system.
Speaker:We were, there was one point at Hopkins.
Speaker:The Hamoth where we didn't have rooms to take on a stroke, a heart attack, nothing.
Speaker:We were overwhelmed.
Speaker:Yeah.
Speaker:This disrupted the health system, this disrupt.
Speaker:That's why you saw that sense of urgency.
Speaker:We didn't hear COVID coming out of a, an office visit.
Speaker:Like we saw monkeypox like men and women go into clinics and saying, which are the
Speaker:heck, are these rashes we heard about.
Speaker:How in the hospital, people dying at high rates.
Speaker:So our job, our focus was we wanna stop that.
Speaker:We want to keep people out of, we wanna prevent severe COVID, all fairness.
Speaker:That's what we put our aim and focus on, and we created
Speaker:great vaccines to do just that.
Speaker:We wanted to make sure enough people got it.
Speaker:So we saw, or in back of our minds, we were like, that's gonna make a dent.
Speaker:If we're gonna truly make a dent in offloading those cases, we really
Speaker:need to go out there and have these conversations, get people to be convinced.
Speaker:And that's what we were trying to do.
Speaker:There was one other thing that the vaccines that we saw unintentional
Speaker:but a huge benefit is it looked like it removed asymptomatic.
Speaker:meaning, Hey, I'm feeling it's one of the devils of COVID.
Speaker:It's how we got around so quickly.
Speaker:It's Hey, I feel good.
Speaker:You feel good?
Speaker:Let's hang out three days later.
Speaker:Hey, I'm pro deposited.
Speaker:Ah, you got me infected.
Speaker:So that was the intention.
Speaker:Now here's science.
Speaker:We got a good scientific product.
Speaker:How are we gonna get the community to buy into this?
Speaker:You know what, if we really put forward decades of building
Speaker:trust, it should have been that.
Speaker:Hey, we got the vaccine.
Speaker:I When I went out to these faith-based organizations I left people were
Speaker:like, how did you convince them?
Speaker:I was like, how did I spent 10 years with these people?
Speaker:I spent, I went, I prayed with them.
Speaker:I went in, they saw me as a member of their community.
Speaker:So did they saw all the same thing with my colleagues?
Speaker:We established trust there.
Speaker:So I go in and I discuss a new scientific thing.
Speaker:The Imam, the rabbi, they quote something to align the cultural identity.
Speaker:Yeah.
Speaker:Sound like I sat there screaming.
Speaker:We have a.
Speaker:The challenge is not every healthcare system did just that.
Speaker:No one else did that.
Speaker:So yeah, I saw businesses require it and looking back on it is the, is it,
Speaker:was it the right or wrong decision?
Speaker:It's hard.
Speaker:I think that isn't a simple yes or no.
Speaker:It seemed 20 million lives.
Speaker:People were be like, it was worth it.
Speaker:Okay.
Speaker:But you know what?
Speaker:We probably also strained a lot of relationships because we
Speaker:didn't go out and message it.
Speaker:It like we're all human and I get that.
Speaker:I get, we don't like to be forced into something.
Speaker:I get that and especially forced into trust.
Speaker:I get that too.
Speaker:And that's my frustration.
Speaker:To some extent, people like I'm gonna say it in this fashion.
Speaker:Like I think there is, a good intention from that.
Speaker:And we have mandates, for other vaccines, going into the schools,
Speaker:going into the military and so forth.
Speaker:, they shouldn't come at the sacrifice of still talking to people and
Speaker:trying to communicate with them.
Speaker:That's the part that frustrates me is.
Speaker:If that's your only angle, you're going to create a lot of friction.
Speaker:You should hold weekly town hall.
Speaker:Do it commit.
Speaker:I remember a health of town hall meeting with one of the local radio stations.
Speaker:I'm sorry, TV stations and someone after that, during, it was just
Speaker:like very, I'm like, look my friend, here's my email address, email me.
Speaker:Let's talk.
Speaker:Cause right now we're just hijacking this between you and me.
Speaker:We emailed back and forth months, weeks.
Speaker:And I'm just coming at it like, this is what you'll gain.
Speaker:I'm not forcing you yeah.
Speaker:Make your own decision crews.
Speaker:This is what I'm gonna say to you.
Speaker:But I was consistent and persistent.
Speaker:He emailed me, I got back to him within minutes.
Speaker:Cause I was like, Hey, I want him to see that I'm invested in him.
Speaker:Yeah.
Speaker:It's one person.
Speaker:I don't know the influence he may, or she, he may have you got vaccinated.
Speaker:Granted two years later, they still got vaccinated.
Speaker:And a lot of it was just, it's it must be serious if you're
Speaker:taking this much time to do it.
Speaker:Of course it is, I want you to be protected.
Speaker:But in the day, like I get this notion of people want to feel like they're
Speaker:making the best decision themselves and whether you're Spanish or American,
Speaker:Greek, or Italian, you like this notion.
Speaker:we had the information and we made it ourselves, or it
Speaker:came from a trusted person.
Speaker:So do you know when people are asking me are there mandates
Speaker:the right or wrong decision?
Speaker:I would say if that's all you did just the mandate without communicating,
Speaker:without discussion, without allowing conversation to occur, I'm probably
Speaker:gonna say was the wrong decision.
Speaker:If you've said mean dates.
Speaker:In addition to, we're gonna hold town halls.
Speaker:We want you to feel comfortable with this decision.
Speaker:We're gonna earn your trust and.
Speaker:We're gonna invest in these kind of conversations, health talks, et cetera.
Speaker:And I'll say, you know what probably was a, the Goldilocks decision, the best of
Speaker:both worlds there, but you can't sacrifice someone's humanity without telling why.
Speaker:I That's the part that gets me because you know what?
Speaker:We planted a lot of friction with it.
Speaker:People that are gonna people matter, it's gonna take a while to win back over.
Speaker:So that's how I'm gonna respond.
Speaker:I'm I know it may not be the right answer you wanted.
Speaker:You're like gimme yes or.
Speaker:But my frustration is if we just drop mandates without explaining to human
Speaker:beings, why we're just gonna create more friction and then we're setting up also
Speaker:the stage for someone to come in and come up with a better narrative, even
Speaker:if it's false to win these people over.
Speaker:And suddenly we're losing a generation of, potential people.
Speaker:Pro-science people.
Speaker:No.
Speaker:And that's one of those things, having, obviously everyone that hears this or
Speaker:that I run into has lived under this.
Speaker:And I saw what my wife went through.
Speaker:She's an assistant principal, the, these conflicting things all the
Speaker:time, because you didn't know to trust this source or local government did
Speaker:something versus the state government versus what was coming out of ni there
Speaker:was these little tweaks and things and trying to thread the needle.
Speaker:And it was just, it was a nightmare because there wasn't.
Speaker:Like you've said there wasn't like that single, trusted, unified voice
Speaker:that it felt like within there.
Speaker:But I think like you, like what you've been talking about, everything
Speaker:circles back to getting the physicians, getting the science,
Speaker:getting the practitioners out there.
Speaker:So it's not just that thing of, Hey, I'm gonna pop my head out.
Speaker:Every time, something big happens, which obviously in our lifetimes,
Speaker:I don't know of anything to this magnitude that has, this is one of
Speaker:those watershed moments when I'm 70, you're gonna go, remember that time
Speaker:back in 2020, that, that was going on.
Speaker:It's definitely a, it's definitely been interesting to watch and it's gonna be
Speaker:one of those interesting things to live through, but I wanted to transition
Speaker:a little bit from one crazy disease.
Speaker:thing to another weird disease and how you and I crossed paths.
Speaker:And June just wrapped up June as a HHT awareness month, genetic disorder.
Speaker:And.
Speaker:Get, if you don't mind first from your medical perspective, I have long since
Speaker:lost all of the the official medical stuff after going through the initial
Speaker:diagnosis, however, 10, 12, 13 years ago, but talking about, the weird
Speaker:diseases, genetic diseases, and exactly what you know, HHT kind of is and what
Speaker:you do and your involvement in it.
Speaker:Yeah.
Speaker:No.
Speaker:I gravitated towards HT know a little bit serendipitously.
Speaker:There was a colleague two colleagues, one was taught, retiring.
Speaker:Another one was just tired and you're like, Hey, you're young
Speaker:in you're a young faculty.
Speaker:Wanna do HHT and actually the reason for agreeing to it is all right,
Speaker:let me tell you the background of this, the reason for it.
Speaker:Right.
Speaker:Cause that, and I know probably everybody that you're talking about too, so
Speaker:I, I really wanna understand how to achieve health equity, and a lot of my
Speaker:investment as we're discussing here, my academic research comes in the form.
Speaker:Part of it is in the form of community engagement, where
Speaker:community can fill in the gaps.
Speaker:, even though that's, it's a gap feelings, very racked, and then trying to take that
Speaker:into kind of health models and so forth.
Speaker:Then I also investigated through preventable risk factors like smoking.
Speaker:and then I wanted actually dived into, when I was offered the HHT position,
Speaker:I was like, I wanna understand how genetics , start off with the same genes.
Speaker:How is that gonna be of an equitable distribution of
Speaker:health outcomes for patients?
Speaker:And the reason why I wanted to do that is because then I can really
Speaker:paint this amazing art in my mind.
Speaker:That's, cause every academic physician is trying to find a niche, but then I can
Speaker:discuss health equity from the lens of.
Speaker:To neighborhoods and everything in between.
Speaker:And really, I felt like it strongly helped complete it.
Speaker:So I gravitated it from that standpoint.
Speaker:First of all, clinically, I love my ADHD patients.
Speaker:I love being their doctor.
Speaker:It's one of the most rewarding things out there cuz you know what
Speaker:it actually, if I scale it back, it's like what medicine should be.
Speaker:Multidisciplinary.
Speaker:When we bring them into clinic, they're seeing all the doctors
Speaker:they need to see in real time.
Speaker:Don't tell me about it.
Speaker:if it scan from head to toe, like I'm picking up ADHD things, but
Speaker:I'm also picking up other things like, Ooh, part looks like it's
Speaker:got a little bit of calcium in.
Speaker:It's make sure you talk about that with your primary care physician.
Speaker:So he or she can help manage that.
Speaker:Like to me, like how we manage this rare disease I'm sitting here.
Speaker:I'm like, why isn't just all of medicine like this, patient comes in.
Speaker:It's like we got a little hodgepodge of a multidisciplinary team versus a
Speaker:disconnect of I'm gonna refer you three.
Speaker:Good luck.
Speaker:So like you saw the one doctor for this problem.
Speaker:That's been CA for six months now I gotta wait additional three months.
Speaker:It's frustrating.
Speaker:So part of me is just, I'm getting that inside of rare diseases and
Speaker:the clinics that are there for them from cystic fibrosis HHC, we
Speaker:really could revolutionize medicine.
Speaker:If we put more stock in, how do we approach it for everyone else?
Speaker:And then the other part of it was, I'm not, and I'm not, I'm gonna point HHT out.
Speaker:The disease I work with, but genetic diseases tend to have a little bit
Speaker:of their own implicit bias because that's all we focus on is the genes,
Speaker:that understanding from genotype to phenotype the clinical presentation
Speaker:and even the criteria for HHT comes a little biased family history.
Speaker:I understand that it's a good notion to understand your genetics, but it's also
Speaker:implying that you have a good family S.
Speaker:where Hey, generations are always hanging out, a lot of socio family
Speaker:disadvantaged communities that fabric of family's not there.
Speaker:So you're putting them, you're like, I don't know, like I haven't
Speaker:seen my dad since I was a kid.
Speaker:I don't know anything about that side of the family.
Speaker:And yes, there's other American family or other American structures
Speaker:that kind of have a similar feel.
Speaker:But family history has its own little bit of implicit bias.
Speaker:It implies you have a good sense of your family structure and then
Speaker:those gosh darn JIA, which yeah.
Speaker:My pale white skin pop out just fine.
Speaker:What, and that's.
Speaker:Let me set the, I wanna set the tone for you calls exactly.
Speaker:In very layman terms.
Speaker:Exactly what HHT is I, and I just let you know, I'm very open about this.
Speaker:Okay.
Speaker:I before you came board and I was working with the previous ones that had retired
Speaker:and moved on, actually did one of the.
Speaker:Double blind studies for different nasal sprays.
Speaker:But it's the way I explain it to other people is my body builds blood vessels.
Speaker:The wall, the thickness of the walls are, they're not uniformed.
Speaker:They're not like real blood vessels.
Speaker:The blood may not go anywhere.
Speaker:It may pull up in certain areas and the most visible sign of this.
Speaker:And I get staffed with this all the time is nose bleeds.
Speaker:The nose bleeds are clearly the most visible symptom.
Speaker:And if you're around me with any particular time, You're gonna see me get
Speaker:one and wonder what is wrong with me.
Speaker:so if I know I'm around somebody new and I expect to spend
Speaker:significant time with them, I will typically warn them ahead of time.
Speaker:Hey, if you see me run out of the room in the mid-sentence, it is
Speaker:because I'm getting a nose bleed and here's why don't worry about me.
Speaker:I'm used to it at this point.
Speaker:I'm not embarrassed by it.
Speaker:So we're talking about the genetics and stuff.
Speaker:In my case, we finally did the genetic testing.
Speaker:neither my mom or my dad actually had the gene that I popped for.
Speaker:How unique is that?
Speaker:How, and
Speaker:all of, yeah, no, it's massively unique.
Speaker:And remember, HHT, isn't a genetic diagnosis.
Speaker:It's a clinical diagnosis.
Speaker:You need these four criteria.
Speaker:Okay.
Speaker:Okay.
Speaker:And yeah, we were aware of something genes that do this, but and what I'm
Speaker:getting at is from my standpoint, what I hope to bring to HHT that
Speaker:we can use for other rare diseases.
Speaker:It's extending beyond the, just the genetics and that over focus of it.
Speaker:It's an appropriate focus, but shouldn't be the central focus.
Speaker:So I'm sitting here realizing there's patients who come in delayed with
Speaker:HHT diagnosis, why they don't know their family history and their
Speaker:skin is very dark from my people of Indian ethnicity to African
Speaker:Americans or Caribbean Americans dark.
Speaker:I can't spot a single gosh, darn telling JTA on their skin.
Speaker:That those blood
Speaker:vessels.
Speaker:Yep.
Speaker:Oh.
Speaker:I've got 'em.
Speaker:I can see 'em on my fingernails right now.
Speaker:and then here's some more implicit bias.
Speaker:We just put out a paper hot off the press, few weeks old adaptation come in.
Speaker:And I was talking about, Hey, we're gonna have to do this IV medication
Speaker:called bevacizumab or known as a vain to help out with your kidney.
Speaker:Correct IV when it's true.
Speaker:Every two weeks you gotta come in six treatments.
Speaker:And he says to me, all right, doc, how many people like me do well with it?
Speaker:It's the first time I was asked I get asked those questions a lot.
Speaker:My pulmonary world, actually my internal medicine passed my about diabetes.
Speaker:Does it work for me?
Speaker:My age group, my ethnicity, my race does work for me.
Speaker:I love that.
Speaker:And I've sat at him and I was like I actually don't know.
Speaker:This is a rare disease.
Speaker:You're probably one of the first black African American patients that
Speaker:I'm gonna discuss, treating you with.
Speaker:So let me do, I'm gonna do whatever physician is.
Speaker:Join us.
Speaker:Every physician draws knowledge from three places.
Speaker:I read about it, right?
Speaker:Clinical textbooks and so forth.
Speaker:I research about it or it's my own clinical expertise.
Speaker:So clinical research or knowledge.
Speaker:So clinically I have a doth of it.
Speaker:So I was like, all right, I'm gotta figure out what's going on.
Speaker:I didn't have that research wise.
Speaker:I don't research on that.
Speaker:So I went into published literature and the paper that we just
Speaker:published based out of the us only.
Speaker:We only looked at us cuz race is very different from country to country.
Speaker:All the big publications about intravenous, that, that zumab
Speaker:never reported on race reported on age, gender, they reported on
Speaker:their genes, never discussed race.
Speaker:And I'm sitting there just flabbergasted.
Speaker:I Could you imagine if the vaccine trials came out and they didn't
Speaker:discuss how many black African Americans they recruited in addition.
Speaker:White slash Caucasians.
Speaker:We would be hung, not one.
Speaker:And it's not exclusive to HHT to have that kind of narrow focus
Speaker:on just, genetics and so forth.
Speaker:So what gravitates me to this is because I feel like.
Speaker:To truly revolutionize medicine.
Speaker:It shouldn't just be on a few fields and so forth.
Speaker:Everyone needs to fuel this notion of health equity.
Speaker:So what draws me to HHT is I want to make sure that we can achieve an equitable
Speaker:conversation for every demographic.
Speaker:Cause HHT is not exclusive to, people from KSL where the graduate came from
Speaker:and etcetera many people bald white guys.
Speaker:Yeah, exactly.
Speaker:so I'm excited about this.
Speaker:I love working with these patients.
Speaker:I think HHT can.
Speaker:A model to revolutionize modern medicine in addition to a model to help us
Speaker:revolutionize how we approach rare diseases from an equitable standpoint.
Speaker:And how do you communicate that down?
Speaker:Because.
Speaker:I, like I said, I'm very open about my case.
Speaker:I don't really hide much about it cuz I try to tell other people
Speaker:that think they may have it.
Speaker:Like I did recently in an email, it was the first one I've actually
Speaker:thought needed to come see somebody.
Speaker:Everybody else I might go see an E T go get your nose, please checked.
Speaker:But in my case, I'd had nose bleeds my entire life.
Speaker:I go to a local ENT thinking.
Speaker:It's just a normal thing because I didn't have any other symptoms
Speaker:that I was physically aware of.
Speaker:And we went through multiple treatment sessions with just trying to stop just the
Speaker:nosebleed itself for at least two years, at least two years before he was he goes,
Speaker:man, I've been in practice for 30 years.
Speaker:I think you may have this really weird thing.
Speaker:I need you to go up to John Hopkins.
Speaker:Yeah.
Speaker:How do we cut down that, that timeframe for this particular, condition
Speaker:as a whole.
Speaker:So from my standpoint, one of the, just, and again, this would be really
Speaker:great if we've had better investment in communicating with individuals, right?
Speaker:Cause you gotta understand as physicians.
Speaker:as clinicians the way we think it's all, it's a lot of it is probability.
Speaker:You have these symptoms you're going through with that.
Speaker:Your mind's probably gonna begin to think common things.
Speaker:And again, it's not a knock when the doctor where what's a probability
Speaker:that you have, HHT, it's low, right?
Speaker:It's a probability it's just malformations high.
Speaker:So we're gonna approach it like that.
Speaker:The cause every doctor, in my opinion, There's two differentials that come
Speaker:to mind immediately, the common thing and something you've missed in the
Speaker:past that they never wanna miss again.
Speaker:That even if it's uncommon, it just lingers at a doc at a colleague like
Speaker:that who missed a blood clot once.
Speaker:And he like blood CLO comes up on its differential for
Speaker:almost everything we discuss.
Speaker:And I'm like, it's, it would be uncommon.
Speaker:It's if you don't wanna miss it, I was like, fair enough, man.
Speaker:That's how we think.
Speaker:And so from my standpoint, how do you get closer to having that physician
Speaker:say, maybe it is a rare disease.
Speaker:It's tough.
Speaker:And and I say this is my recommendation for patients.
Speaker:Make sure you leave that clinic setting with an understanding of.
Speaker:what they think is going on.
Speaker:Why do they think it's going on?
Speaker:And what do they think is gonna happen to me?
Speaker:Because that way, you know what they're thinking, and now
Speaker:you're off on this trajectory.
Speaker:Cause who's gonna reveal the right answer is time.
Speaker:And suddenly, if you feel like you're deviating from that, if things just
Speaker:didn't connect, you report back to that, not in a scolding way in just
Speaker:a cl like, Hey, I'm your patient?
Speaker:You're my doctor.
Speaker:This is our relationship.
Speaker:Let me tell you, will you look out?
Speaker:Ah, it deviated it didn't.
Speaker:I do that constantly with my patients.
Speaker:Cuz it's very humbling.
Speaker:Listen, Mr.
Speaker:John, this is what I think is gonna happen.
Speaker:You're gonna communicate to me like I'm not your doctor.
Speaker:She's at clinic.
Speaker:This is I'm your doctor all the time.
Speaker:Here's my email.
Speaker:If any of this deviates from this hypothesis today, you gotta let me know.
Speaker:Don't wait three months being miserable.
Speaker:And I get patients who do that.
Speaker:Dr.
Speaker:G's not working out, man.
Speaker:What you said is not happening.
Speaker:Great.
Speaker:That means I'm going down.
Speaker:My differential.
Speaker:Cause sometimes common things present uncommonly and uncommon things present,
Speaker:commonly it's, we're trying to juggle with the data that we have at this moment.
Speaker:So that's it from my standpoint, have an open line of communication and see if the
Speaker:hypothesis he or she laid out clinically during that moment is happening.
Speaker:And if it's deviating where you're like, man, this just doesn't seem right.
Speaker:You're trust your spider senses and have that discussion.
Speaker:Honestly, I think the way you get to.
Speaker:having people think of it sooner.
Speaker:Yeah.
Speaker:We can do campaigns.
Speaker:We can raise awareness.
Speaker:That's great.
Speaker:And that happens constantly for a lot of diseases.
Speaker:Same at the end of the day, though, we are going to focus
Speaker:on things that we commonly see.
Speaker:That's just how we have sure.
Speaker:Happen to think.
Speaker:And so from my standpoint, it's really going to also just depend
Speaker:on the patient's advocacy.
Speaker:There's nothing wrong with patients, Google.
Speaker:Come and tell us, why do you think this is?
Speaker:Cause from my standpoint, I actually like that.
Speaker:Cause it gives me an impression of what they're most concerned about.
Speaker:And I can put out fires or reaffirm, like that's not what's happening, but
Speaker:from my standpoint, it's happen having that open dialogue and really making
Speaker:sure you have an understanding of what they think the trajectory's gonna go.
Speaker:Cause if it's fulfilling that, yeah.
Speaker:They're spot on made the right judgment call.
Speaker:If it's deviating from it, then you gotta start saying, Hey, you said.
Speaker:This is what's happened, they're making the best decision to have, right.
Speaker:It's like beating that meteorologist and being like,
Speaker:tell me the weather in 14 days.
Speaker:Like then what I think is gonna be right.
Speaker:And so from that standpoint, if it's deviating, communicate that back to them,
Speaker:have an open dialogue, professional, respectful, and say anything else.
Speaker:We should start thinking as you chip away from common things to now, beginning to
Speaker:look in the uncommon realm and that's it.
Speaker:This is to me, why I love being a doctor.
Speaker:And I tell that to every.
Speaker:With the data I got now, the decision I'm gonna make, that's how we'll go forward.
Speaker:If it's not working out, we'll figure it out.
Speaker:If you got me not going anywhere, I don't quit.
Speaker:You figure it out.
Speaker:no, and I would say without getting very graphic, which I've told this
Speaker:story very graphically on what caused him my E T to actually it up the I
Speaker:remember the attendant that answered the phone after I went through some very.
Speaker:Horrifying experiences trying to get the nose bleed stopped toward the end.
Speaker:And he told me, he goes, you got a direct line to me from now on.
Speaker:There will be no gatekeepers.
Speaker:And I have told the nurses that cause the experience was it got
Speaker:to be, it got to be painful.
Speaker:Let's put it that way with the aggressiveness of
Speaker:what we were trying to do.
Speaker:But as we wrap up what would you suggest for the individual?
Speaker:We always talk about.
Speaker:Diet and exercise to improve health, but what would you recommend for the
Speaker:individual that may not be something that is, is that they can do to better
Speaker:improve their overall health condition?
Speaker:As you look at the chart, you look at the information for us
Speaker:to take more control of our own
Speaker:lives.
Speaker:This is what I would encourage everyone, right?
Speaker:You gotta understand as doctors, clinicians, nurses, our goal.
Speaker:Is survival.
Speaker:Number one and then quality number two, right?
Speaker:You can't have quality unless you're alive.
Speaker:So yes, that's why our bias tends to focus on survival.
Speaker:Hence why even in the pandemic you saw that we didn't focus
Speaker:on stopping transmission.
Speaker:We focus on stopping stream VE COVID calm that down and then
Speaker:we can dive into all right.
Speaker:Let's figure how we stop this as well.
Speaker:What I would encourage everyone, you gotta have this, you know what health means,
Speaker:even though you never maybe sat down and.
Speaker:Probably means having a job, having, a social network, having a faith,
Speaker:having a culture, having a hobby.
Speaker:What does health mean to you?
Speaker:And then communicate that to your doctor.
Speaker:So whatever he or she recommends can align with it.
Speaker:I think you need, for instance, and I think you need to get a
Speaker:mammogram back to this and they're like, I don't wanna be a patient.
Speaker:And he, and she.
Speaker:I see you working every day.
Speaker:I see you enjoying, your grandkids.
Speaker:I'm asking for your mammogram, cuz if we find anything, we can treat
Speaker:it before we Rob you of what you're enjoying a minor in convenience
Speaker:to prevent a massive disruption.
Speaker:That's what I really would encourage people.
Speaker:You don't have to have the fix these numbers or do I have to
Speaker:check my blood pressure every day?
Speaker:I mean you can, if you want go nuts, collect the.
Speaker:what I want out of every patient is just tell me what health means to you.
Speaker:What do you want to achieve with it?
Speaker:You want to be able to go to that job interview, not huffing and puffing.
Speaker:Great.
Speaker:We'll work on good inhalers to achieve just that you wanna go to that same job
Speaker:interview, not pouring out nose bleeds.
Speaker:Great.
Speaker:We'll work because I can have patients with the same symptoms, same
Speaker:objective findings, and one wants every aggressive thing done the other.
Speaker:One's you know what?
Speaker:I'm okay.
Speaker:And I respect.
Speaker:, I want people to tell me what they want out of health.
Speaker:Cuz when they look at me, they're like, you're the doctor?
Speaker:What do you want?
Speaker:I was like, I just want you to live and be happy.
Speaker:That's you.
Speaker:I don't have randomized controlled trials telling me how to make you happy.
Speaker:How can we as a medical community, accommodate your end, being
Speaker:your, not just me existence, but your living your livelihood.
Speaker:So what I would just tell every patient, have those conversations for the living.
Speaker:Even think about it from an advanced directive.
Speaker:How far do I want to go?
Speaker:If I'm 30, my 30 year old advance directive is very extreme but I know
Speaker:what I'm, it's probably gonna be a little bit looser it's I'm like, alright.
Speaker:Give a week.
Speaker:So I would just encourage everyone to just.
Speaker:just talk to your what does help mean to you?
Speaker:And then you communicate that to your doctor, what he, or she can align
Speaker:health goals to achieve just that
Speaker:awesome.
Speaker:Best way to put it best way to connect with you on Twitter.
Speaker:Yeah.
Speaker:By all means my DMS are open.
Speaker:Shoot me, whatever you guys want.
Speaker:I, you know what, this is, it's all the only life we got and one of the
Speaker:beauties of this planet is each other.
Speaker:It's people.
Speaker:There's bad.
Speaker:I get it.
Speaker:But we're so good.
Speaker:We're, we've sent a robot to Mars.
Speaker:Do we not ever sit back and say, we got a robot on that planet.
Speaker:So connect away, DM away, whatever you guys want.
Speaker:But that is, and and if the conversation gets lengthier, I'll give you my email
Speaker:and you guys can send me an email.
Speaker:Sounds good.
Speaker:I appreciate this has been super fun for me and informative.
Speaker:Hope you had a good time.
Speaker:I had a great time invite.
Speaker:I'm happy to come back whenever you want.
