November 20, 2024 • 36 mins
Believe it or not, there is extensive variability in how dysphagia is defined. Listen in as Drs. Giselle Carnaby, Debra Suiter, and Martin Brodsky discuss challenges and importance of defining dysphagia. The discussion highlights variability in how dysphagia is understood and defined across research, clinical practice, and healthcare systems. This gap has implications for patient care, reimbursement, and professional credibility. While acknowledging the complexity of the task, the speakers emphasize the progress made, the importance of raising awareness, and some steps needed to create a more cohesive approach to dysphagia research and treatment.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Tim Stockdale (00:00):
This episode is brought to you by Phagenesis.
For stroke survivors withsevere neurogenic dysphagia, the
Phagenesis NeurostimulationSystem provides implant-free
treatment through pharyngealelectrical stimulation.
Learn more at phagenesis.
com.
Welcome everybody Joining metoday.
I have Drs Deb Suiter, GiselleCarnaby and Martin Brodsky.
How are you all doing today?
Doing good, doing well, doingwell, all right.
(00:24):
Doing today, doing well, doingwell, all right.
So the reason why we have somany people here today is there
was an undertaking earlier thisyear that extended well on
before that, about the idea ofdefining dysphagia.
So thinking about that for asecond defining dysphagia most
of you are listening to thisevaluate and treat dysphagia
every day.
So you probably are thinkingwell, that's stupid.
(00:44):
Everybody knows what dysphagiais.
If you were to think that I amgoing to throw you to the wolves
here and let them dissect itfor a second, what is the
problem with thinking that weunderstand the nuances of what
dysphagia is?
Debra Suiter (01:03):
Well, I can go first.
I think we know from our reviewof literature.
So what we did, we did anundertaking that started with a
discussion that Marty and I hadyears ago about how we're
defining this thing.
We all think we know Because,again, yes, you tell people,
you're having a conference ondefining dysphagia and it sounds
like a no brainer.
(01:23):
Everybody knows what we'retalking about.
But talking to Marty andtalking to clinicians, and then
diving into the literature andGiselle was really instrumental
in helping us figure out how westarted to look at this we
realized that we're all over theplace, at least within the
research literature.
There is no agreement amongstresearchers, amongst clinicians,
(01:45):
amongst professionals fromdifferent backgrounds as to what
this thing is that we're alltalking about.
Again, we all think we know,but it became very clear we
don't.
Tim Stockdale (01:56):
What sort of variability did you see Like?
What kind of represents maybesome of the extremes?
Debra Suiter (02:03):
Do you want me to go so?
Giselle Carnaby (02:08):
In the literature, the extremes could
be as simple as just a statementof swallowing difficulty to a
specific scale that very fewpeople use.
There was one that I actuallyhad to look up because I'd never
heard of, and that even in asingle publication, one group of
(02:31):
people might define dysphagiasix different ways.
So which one is it?
So we don't even agree withourselves within our own
publications, which was kind ofstartling even agree with
ourselves within our ownpublications, which was kind of
startling.
Tim Stockdale (02:51):
What do you think some of the implications of
this are within the research forthose who don't have PhDs, like
the three of you?
Debra Suiter (02:57):
I don't think that helps us, by the way.
Martin Brodsky (03:02):
I think, at the very least a common language
with a common understandingwithin healthcare and by
healthcare I'm going to be asbroad as the person who answers
the phone and says and hearsfrom the patient that they have
dysphagia all the way up to andpast the healthcare provider who
(03:23):
gives that care in any form,all the way to the third party,
payer and government officialsrelated to Medicare.
In defining what's going to bereimbursed based on what and
what, coding, et cetera, etcetera.
It is a ubiquitous problemacross the entire domain that is
swallowing disorders.
Tim Stockdale (03:45):
I'm thinking of something.
Yesterday I had an internalchart audit at one of the
outpatient clinics I work at andthey have a special place for
everything, and I had mydysphagia diagnosis there, my R
code, but it wasn't in the rightplace and so, because it wasn't
in the right place, it didn'tget populated onto the
certification letter that thephysician signed and it was sent
back and it was something thatI needed to resolve.
And so, because it wasn't in theright place, it didn't get
populated onto the certificationletter that the physician
(04:05):
signed and it was sent back andit was something that I needed
to resolve.
And so, just thinking of that,if you don't have a diagnosis,
insurance is not going to payfor treatment, you're not going
to pay for treatment.
And so I think justunderstanding what that is, so
that the physician can say, well, yeah, they do.
When they sign theauthorization or an insurance,
(04:26):
companies don't have somethingto contest it with, it makes a
lot of sense.
So just, you know the sheerimportance from a payer source.
I mean, that's not the biggestthing, but that is a pretty big
thing.
Giselle Carnaby (04:38):
I mean, even when you're talking our codes,
it's a symptom code, not adiagnostic code.
Tim Stockdale (04:43):
Okay talking our codes.
Giselle Carnaby (04:44):
It's a symptom code, not a diagnostic code.
Okay, so the implication forfunding and for reimbursement is
different for what we do, andthen what constitutes that our
code?
And it's different in differentclinics.
So some symptoms we recognizeas associated with swallowing
disorders where others don't,and so that's part of the
(05:05):
problem with definition.
Yeah, just even using that codebecomes variable, and that puts
us at risk of not being paidfor our services.
Martin Brodsky (05:17):
In talking about .
When you speak with NIH programofficials, you'll note that
dysphagia does not have a home,that is, that swallowing and
swallowing disorders is notexpressly stated in any mission
statement across all of theinstitutes at NIH, to the point
(05:41):
where program officials say,uh-uh, that's not us, that's
them.
And now it's a little bit ofpast the buck as to what it is
that's going to be the focus ofthe grant.
So, for example, manyclinicians in speech-language
pathology, many researchers inspeech-language pathology, in
(06:05):
speech-language pathology, thinkthat speech-language pathology
and audiology have a home, ifyou will, within the National
Institute for Deafness and OtherCommunication Disorders, or
NIDCD.
That is, in fact, not the case.
It's not that the professionhas a home, it's that the topic
has a home, okay, so I want todraw the distinction
(06:26):
specifically within swallowingdisorders.
A person, a researcher, who putsin a grant that deals with
stroke up in the air immediatelyis going to be NINDS.
In neurological disorders, itcould be NIDCD or, if they're
old enough, it could be theNational Institute for Aging,
(06:46):
nia.
That's the issue that we facewhen it doesn't have a home.
Okay, and let me be very clearMany disorders, many diseases
don't have a specific homewithin NIH.
Diseases don't have a specifichome within NIH.
It depends on how you write thegrant, but not having this well
(07:15):
understood certainlycontributes to the problem in
not knowing where it exists.
Tim Stockdale (07:16):
So just real fast back to somebody who's
listening and might not evenknow.
You know what?
What is an R code?
What is?
What is a?
G code, thinking of the ideathat, if we're, when you're
inputting a diagnosis, you'retrying to get treatment for
somebody who you believe hasdysphagia that's impacting their
life in one way or another,there's an ICD-10 code that you
have to put in to tie to that.
(07:37):
And so, stepping back evenfurther, giselle mentioned an R
code.
So what's the difference thenbetween an R code and maybe a
more pure diagnosis code?
Giselle Carnaby (07:49):
So R is symptom only, okay, which means it
extends from another diagnosiscode.
So there has to be a fulldiagnosis code.
So for any one patient, thediagnosis code could be specific
for stroke, or it could bespecific for adenine cancer, it
could be specific for als excuseme.
(08:11):
And so then, depending on thesymptom, there's an associated r
code, okay, so, um, for example, say the diagnosis is unknown
and they can't work out what itis Like.
Let's say it's a collagenvascular disease and we haven't
typed it appropriately, so thatpatient doesn't have a clarified
(08:34):
diagnostic code.
But they may have a whole hostof R codes, right?
And so that makes it reallydifficult in terms of if you're
trying to bill at that level,your billing codes follow your
coding system and billing for anR code is less than you'll get
for a diagnostic code.
Okay.
Tim Stockdale (08:57):
Very interesting.
All right, Marty, sorry, Ididn't mean to interrupt you.
Giselle Carnaby (09:01):
Yeah, this thing about defining this term
has specific implications, notjust for us all being on the
same page, which is also reallyimportant, but also on how we
get paid and how we identify ourservices and how we demonstrate
that our services are ofsignificant impact.
(09:23):
Okay, so clinically, yeah, itmakes a big difference.
Tim Stockdale (09:33):
So we have a better idea of what we need to
do.
What have been some of thebarriers in being able to get
toward this goal, thisundertaking?
Debra Suiter (09:47):
toward this goal, this undertaking.
Well, I think that the biggestbarrier that we've identified is
just realizing that, thediscrepancies and the fact that
so many of us are looking atthis thing called dysphagia in
so many different ways and a lotof us are very wedded to those
beliefs.
So trying to take a step backand to understand that we need
(10:09):
to reach some common ground, Ithink, has been an issue
Certainly.
I think the other thing that werealized when we took this on
is, again, we thought this was avery simplistic sort of task
come up with a definition fordysphagia and, of course, we
thought we could accomplish thatin a fairly quick manner.
And what I realized, one of thebiggest takeaways from this
(10:32):
conference that we had a coupleof months ago is we spent three
hours discussing a frameworkwhich was necessary.
We needed to take a step backand come up with common ground,
but we couldn't even agree onthat.
So this is a.
I think it's going to be a stepback and come up with a common,
with common ground, but but wecouldn't even agree on that.
So this is a.
I think it's going to be a muchlonger process than than any of
(10:52):
us realized at the start ofthis.
Giselle Carnaby (10:57):
I agree.
I think I want to align it witha song and call and say it's a
climb, we are at the beginningof this and that's what we've
come to realize and, yeah, allthe hard work has yet to happen.
And so I think one of the thingswe can take away from the
(11:19):
conference we had is that thisis a call to action, not just
for us but in the future, to getpeople moving beyond where we
are now.
We have this mandate thateveryone agreed.
Yeah, this is a good thing, weshould be pursuing this, but
then, beyond that, how are wegoing to do that?
So that framework is reallyimportant.
(11:41):
But then, beyond that, how arewe going to do that?
So that framework is reallyimportant?
And then, beyond that, divideand conquer into smaller, more
digestible chunks as we moveforward to develop it.
Martin Brodsky (12:08):
It's going to take more pretty solid product
in terms of many disciplines inagreement on how we move forward
, that in the end willstrengthen every single aspect
of funding, of diagnosis, oftreatment, of the way that we
(12:30):
think, of the way that weapproach, maybe just even a
solidified approach to research,and that we're all finally on
the same page and we can allthink about it very similarly.
Giselle Carnaby (12:44):
And I mean I think also, tim, you know, a lot
of the time when I'm out andabout talking to clinicians and
people who are just you knowthey're slogging away out there.
I hear you know we're not wellrespected, what we're doing
isn't well respected, it's notwell appreciated.
I don't feel like they takewhat I say seriously enough.
Part of that comes from thefact that we're delegated to
(13:07):
symptom-based approach ratherthan, hey, we're going to affect
the change in something thatthat patient's experiencing that
is life-altering, and that'swhere moving this from R to
something more like G is reallyimportant for the professions
that work in this domain.
Martin Brodsky (13:29):
Dr Greg Jyka, who is the neurologist who
joined us for the past two years, made a point and this one kind
of sticks with me quite a bitright now, just for background
of those who were not present inthe conference and not aware of
his work.
His work has primarily focusedaround dementia and issues
(13:52):
associated with mild cognitiveimpairment, and he has been on
task forces within the groups ofneurology and others who have
addressed what exactly is mildcognitive impairment, and he was
one of the foremost leaders inspearheading how to get there,
(14:13):
first and secondly, moving fromthe R to the G code, the R to
the G code.
And one of the things that hebrought to light was that in
order to do that, you needbuy-in from physicians and,
broadly, the American MedicalAssociation.
(14:34):
In order to do that, slpssimply are not going to be
(14:55):
successful by themselves.
That's straight up, no mincingwords here.
We need partners in this, them.
We need to be on the same pagewith them, we need to move in
parallel with them.
Certainly, we can havedisagreements, and disagreements
are going to make us better,but in the end and at the end
there's going to be acollaboration that takes place
(15:17):
where all groups are on the samepage.
That takes place where allgroups are on the same page, and
you're going to have people whocan take this to the AMA and
say it's time we need to movefrom the R to the G.
Tim Stockdale (15:31):
There's.
I've kind of have a one trackmind in this that I'm looking
back at the systemic issue, likeyou mentioned, the idea that
speech pathologists are notgoing to do this on their own.
We need partners to be able toappeal to the AMA to make
something happen.
But also I step back and thinkabout just our training Again.
I also see, like theDunning-Kruger and everything,
(15:54):
you know a little bit and youthink you know a lot, and how I
believe we're trained in speechpathologists.
We learn so little about somuch and so we have very little
depth.
And so when it comes tosomething like dysphagia which,
as we all know, has tremendousimplications on the individual's
health, wellbeing, quality oflife, so many different areas
there is so much depth to itbecause it involves interplay
(16:17):
between various body systems.
If you get an individual who's80 years old and they're healthy
but their functional reservesaren't what they were when they
were 20 years old and they getsick, and how that can cause a
transient, so to speak,manifestation of dysphagia, but
just the complexities of this.
And so I think one of thethings that we have going
(16:37):
against us right now is ourtraining, just our training, and
being able to give us thefoundation to better understand
this and to better understandthe impact of it on health,
cause we're talking about movingit from a symptom to something
greater than that, to to to acondition it sounds like.
But if we don't understand howall of these things interact,
how are we going to be able toadvocate for that?
(16:59):
So I see the benefit from one,from a credibility standpoint,
if we partner withlaryngologists and
gastroenterologists andneurologists and so on going
into this, but also from theperspective, too, of getting
their understanding of how thesethings tie together.
So that need for a cohesive webwhere we can all communicate
together, for a cohesive webwhere we can all communicate
(17:26):
together.
What is interesting to me?
At this conference, for example, the majority of individuals
were speech pathologists.
How do we get that buy-in fromphysicians?
How do we get more physicianscoming to the table and being
willing to discuss this so wecan move forward with more
momentum?
Debra Suiter (17:40):
Well, I think the thing that really stood out to
me is you're looking at thethree of us that organized this
conference.
We're speech-languagepathologists and certainly,
while we reached out to ourphysician colleagues, having
somebody who's going to championour cause on the physician side
of things is we just need tofind somebody who's invested
(18:01):
enough to do that and it's Imean, it's sad to say we should
be able to advocate forourselves, of course, but you're
right, we need that physicianbuy-in and yeah, and so we've
included them.
Giselle Carnaby (18:13):
We deliberately included them in our
conferences, but, again, wedidn't have nearly the
representation from from thephysicians that we did from
speech and some of that, to behonest with you, is a meeting
logistic issue as well, becauseI mean getting physicians time
(18:34):
means providing cme credit andto have physicians advertised
for us, and that you know Romeisn't built in a day.
I mean, we did get physicianrepresentation at that
conference.
In fact Dr GK spearheaded it.
So you know we do have somedepth on the bench, one might
(18:58):
say, but that depth certainlyneeds expanding and that's food
for the future, Absolutely.
Martin Brodsky (19:07):
I think there's a little bit of a culture among
the societies related todysphagia in that I think every
single one of them, the majorityof the attendees to any one of
those conferences, the majorityof the members to those
conferences sorry to thosesocieties are speech language
(19:27):
pathologists.
So there is a culture that'spart of this.
That's not to say that you knowacross the societies.
To give you some idea, dentalis a gigantic part of the
Japanese Society for DysphagiaRehabilitation.
It is not a giant part, exceptto say that we have dentists
(19:48):
from Japan who are members ofthe Dysphagia Research Society.
There is a culture here andit's within country, never mind
across countries and around theworld.
And it's within country, nevermind across countries and around
the world.
So we made very big attempts togetting people who wouldn't
(20:11):
even ordinarily attend DysphagiaResearch Society in North
America.
We reached to gastroenterology,neurology, physical medicine
and rehab, intensive care,pulmonary and critical care
medicine, ent.
Every one of those were notonly on the invite list but they
were present.
So yeah, as Deb and Gisellehave said before, the depth is
(20:34):
certainly there.
I think what we need to work onright now is that there's a lot
of interest by virtue of thosefolks to be there.
I think we need to work on thenumbers and I think that's part
of the problem.
It's not just what we're doing,it is more broadly the way that
the culture has evolved,related to swallowing and
(20:56):
swallowing disorders.
And let's bear in mind I'm notgoing to throw anybody under the
bus here, in fact I'll defendit Dysphagia, as has been
brought to light inspeech-language pathology, only
began in 1992, when it wasrecognized.
So here we are, 32 years later.
Okay, we are young.
(21:18):
There's a lot more to grow.
Tim Stockdale (21:24):
Some of us were there when it evolved, I was on
my third grade playground man.
A lot there, a lot there.
It's something that I think isvery promising.
So, dr Jyka, he's a colleagueof Dr Suter, right, okay so, and
(21:50):
he was, you know, not justcoincidentally instrumental in
the advancement of definingdementia or mild cognitive
impairment.
Forgive me, I'm going to misssome of the nuances of that.
But so you and what you've beendoing, deb, have had enough
credibility and enough influencewith him to be able to get him
on board with this, which Ithink is great.
And it speaks to the potentialthat is there, for when speech
(22:11):
pathologists get a lot of depthin dysphagia and really, really
understand the nuances of whatwe're talking about, that we can
get buy-in from others outside.
And so I guess that's one thingI'm taking away from that.
But also I'm thinking, you know, oropharyngeal dysphagia as a,
as a physiological concept Imean that exists in our
(22:33):
wheelhouse, like that's ourthing.
If you're talking aboutesophageal dysphagia, it's
primarily gastroenterology, andif you're talking about, you
know, the anatomy and physiologyof the upper aerodigestive
tract, at least the pharynx andthe larynx, and you're, you know
, otolaryngologist, but when youget into the physiology of it,
that seems to be something thatprimarily resides with us and we
(22:53):
are.
We're at a disadvantage becausewe're not physicians, and I'm
not saying that that shouldn'tbe there.
I think we can do it.
I think we can do a great job.
I think there's some thingsthat we can certainly tweak in
education to become better, butconsidering it's just been since
1992, I mean that's fairlyimpressive.
I think that's fairlyimpressive that we've been able
to get as far as we have gotten,and so I don't think the
(23:15):
effort's unnoticed.
Giselle Carnaby (23:16):
I think, tim, you also need to realize that
other countries are doing thingsdifferently.
So at the moment, you can takea specialty degree out of
Belgium and you can become adeglutologist.
You can become a specialist inthis area.
I think, with a little crystalball going forward, you're going
to see more of that.
Tim Stockdale (23:35):
Yeah, I agree.
Giselle Carnaby (23:41):
And that, by the way, is not an SLP degree.
Physicians are taking thatdegree too.
Tim Stockdale (23:46):
Really Now, if that does catch on, how do you
see that influencing this all inthe future?
Giselle Carnaby (23:58):
And I guess I mean that's so potentially so
far.
Maybe it's hard to speak to.
Well, if we're able to, as agroup-disciplinary group, get to
a definition, I think that justensures that pathway even more
absolutely so.
Tim Stockdale (24:09):
We've talked about a bit about what we need,
why we need it.
We've talked some about how doyou think we're going to get
there and the challenges thatwe're going to have.
Let me me just if you were to.
We've talked about differentnuances to that, but if you were
to summarize in your mind howyou think we're going to get
there and maybe one of theprimary challenges, could I just
(24:30):
hear a little bit like a briefsynopsis for each of you?
And if you wouldn't mind, Ishould have asked you to do this
at the beginning.
When you say this, just say whoyou are the first time, so
people know your voice.
Debra Suiter (24:43):
You do this at the beginning.
When you say this, just say whoyou are the first time, so
people know your voice.
Sure, so I can go first.
It's Deb Suter.
So, in terms of how I thinkwe're going to get there, I
think we've hit on a lot of italready.
I think we need we need to getbuy in from the, the groups that
are the key stakeholders here,from the groups that are the key
stakeholders here, and one ofthe things we haven't mentioned
(25:04):
in this discussion is we need toget buy-in from patients and
from patient advocacy groups aswell, and third-party payers.
So, I think, getting the rightplayers to the table and again,
we're very proud of the factthat we did have as many
different disciplinesrepresented at this conference
and the conference we heldpreviously but getting that
(25:25):
buy-in and then realizing thatwe have a huge, huge task ahead
of us and breaking it down intosmaller parts and coming up with
focus groups that are going tobe able to take on that task.
It's a task that's bigger thanthe three of us and we need to
start recruiting more people toget involved.
Tim Stockdale (25:49):
Okay, thank you.
Thank you.
Who wants to go next?
Giselle Carnaby (25:54):
Me Okay.
So this is Giselle Carnabyspeaking.
So I see this as a multi-yearaction, and so I think what
we're looking at is thedevelopment of working groups on
specific aspects of this sothat we can start to break down
that categorisation that webegan to investigate in this
(26:15):
first conference.
I think we're going to have towork on partnerships and their
partnerships with othersocieties, not just dysphagia
society, but also with themedical societies at different
places that have an investedinterest at the moment in this
symptom code and what it wouldmean for them if this changes
and advances.
And I think, along with that,you're going to need to start to
(26:39):
see a regular yearly review ofprogress of those groups coming
back to a central body andthat's how medicine has done
guidelines and buildingguidelines and building from R
to G codes, and I think we'regoing to have to follow the same
tried and true pathway.
Martin Brodsky (26:58):
Well, I'm Marty Brodsky and I agree with both of
their perspectives, and I'lladd perhaps one more, and that
is just to say that it's goingto take all of us working
together.
It's not one group, it's not oneprofession, it's not even one
country, but it's all of usworking together toward this
(27:20):
common path.
So you know, I'm aware that atthe European society for
swallowing disorders conference,there has now a combined or
coalition of what is now theWorld Dysphagia Coalition across
five groups around the world.
Who are these societies thatexist is one coalition across
(27:57):
these five major groups ofmembership, country-based, or at
least continent-based societiesrelated to dysphagia.
That's a step in the rightdirection, and now we have a way
, at least in this consolidatedformat, to bring all of us to
the table a little bit easierthan we did even moments ago.
That's what this is going to be.
It's going to be consolidation,it's going to be ultimately
(28:17):
consensus and, make no mistake,even though we're talking about
professions and countries and soforth, it's still going to be
governing bodies like theAmerican Medical Association
that are also going to have tobe a partner in this.
It's just a little bit laterdown the road, once we have
something a little bit moresolid, that's evidence-based,
(28:39):
that we can present them as aunified format.
Tim Stockdale (28:43):
I mean, you look at such an evolution and thought
in this, when you think of justhow do we define dysphagia,
versus the more you're digginginto it and you're looking at
all the nuance and you'relooking at all the things that
have to happen for us to getthere to a unified definition, I
think it's extremely difficultto see, if not impossible to see
, the magnitude of how many notsmall steps, but just how many
(29:06):
steps it takes to get to this,and so it looks like it's
unfolding really beautifully.
To me, there's been a precedentset by others within this, so
there's a pattern.
There are people who areinvested in this.
It sounds very promising and Ireally personally appreciate
that in a number of levels.
I want to.
(29:26):
So you, marty, and this is foranybody, but you had mentioned
it's going to take all of usworking together.
I'd like to really wrap up withso, for listeners, for those
who are here listening to thisin whatever setting they might
be in, what does all of usworking together look like?
What might it look like forthem?
Martin Brodsky (29:47):
What might their actionable steps within this be
.
It's interesting you mentionedthat because, as you were
talking just now, I was thinkingabout what are the steps?
We haven't even defined thoseyet.
I don't think anybody has.
This is, in every aspect, adynamic situation that is
responsive to the informationthat's gathered at every single
(30:09):
point.
So, to know where we're goingto be tomorrow sure, we're
finishing up our scoping reviewwe need to put together a
summary paper for what occurredat the conference, and both of
those papers, in and ofthemselves, are going to suggest
steps to move forward.
Whatever happens in those nextsteps will dictate where we go
(30:33):
next.
I don't have those answers.
I don't think anybody does froma broader perspective.
Tim Stockdale (30:43):
From a broader perspective and I know I I beat
this dead horse all the time butjust the idea of of us
continuing to build credibility,to not just credibility Let me
take that back Us building thedepth of our knowledge.
Building the depth of ourknowledge within dysphagia,
within the populations that wework with, understanding the
(31:05):
etiologies that lead to what isthis symptomatic diagnosis of
dysphagia right now.
Better understanding that, Ithink, is going to help us to
better understand the reason forthis, why we need it.
It's going to help us to buildcredibility.
But also, I mean, what aboutthe idea of what you are doing?
You're raising awareness of it.
I mean, how many people, just inthe last three months, through
(31:28):
your conference that you allhave held, this has been placed
on their radar and now they'relike I didn't even know that was
a problem, but now they knowit's a problem and they have
some sort of thing that'sdriving them with purpose to get
this accomplished.
And so just, I don't know.
A couple of thoughts.
I like to oversimplify thingslike that, but I know it's a lot
more complicated.
Martin Brodsky (31:50):
I want to come back to your credibility comment
and I don't want tounderestimate at all the amount
of credibility we already have,you know, since let's just call
that that 1992 benchmark.
Okay, 32 years of research, 32years of experience, multiplied
by the number of clinicians andresearchers that are part of
(32:12):
that.
There's credibility there.
What we're trying to do, Ithink, is refine and get better
reimbursement and get betteracceptance across the healthcare
professions for what thisdisorder is.
I think part of what you justmentioned in terms of more
(32:33):
people, more people now beingaware, that was a huge first
step in all of this.
That was this year.
It was awareness.
It was bringing everybody on.
It was getting everybody ontothe same page in some form of
consensus.
That's a giant step.
Think about the hierarchiesthat we've all learned as
(32:55):
clinicians with regard tocognition Awareness and
sensation come first.
If you don't have that, nothingelse matters.
That's where we are and it justbuilds from here.
Giselle Carnaby (33:10):
Love it.
Yeah, I just want to echo alittle bit of that but also put
something in people's minds.
I mean, I see what we're doinghere as much like when the World
Health Authority created theICF.
It's just as complicated, andthey did it over a series of
years and developing thisconceptual framework and then
(33:31):
slowly building the frameworkout to the different definitions
of different components thatcontributed to that.
This is kind of where we'regoing, and you know we can take
lessons from other people, butall of those people that
contributed to that framework,from a multitude of different
professions, that's us.
Tim Stockdale (33:55):
Very good.
Well, thank you everybody.
Again, we have Drs Carnaby,Brodsky, Souter and myself.
Thanks for listening.
If you have any questions afterthe fact, don't hesitate to
reach out to me.
I can kind of forward theemails or contact as needed, and
I guess that's it.
That's it for today, but thisis just one little tiny baby
(34:15):
step and the mammoth elephantwe're trying to eat here.
How's?
Giselle Carnaby (34:21):
that for an outro, I don't know man, I got
stuck.
Tim Stockdale (34:24):
But anyway, thank you all for being here.
It was great Appreciate seeingyou and hopefully we'll talk
soon, thank you.
Thank you and hopefully we'lltalk soon.
Debra Suiter (34:30):
Thank you.
Tim Stockdale (34:31):
Thank you.
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Phagenix Neurostimulation Systemfor pharyngeal electrical
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com to find out more.
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(34:57):
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Welcome everybody Joining metoday.
I have Drs Deb Suiter, GiselleCarnaby and Martin Brodsky.
How are you all doing today?
Doing good, doing well, doingwell, all right.
(00:24):
Doing today, doing well, doingwell, all right.
So the reason why we have somany people here today is there
was an undertaking earlier thisyear that extended well on
before that, about the idea ofdefining dysphagia.
So thinking about that for asecond defining dysphagia most
of you are listening to thisevaluate and treat dysphagia
every day.
So you probably are thinkingwell, that's stupid.
(00:44):
Everybody knows what dysphagiais.
If you were to think that I amgoing to throw you to the wolves
here and let them dissect itfor a second, what is the
problem with thinking that weunderstand the nuances of what
dysphagia is?
Debra Suiter (01:03):
Well, I can go first.
I think we know from our reviewof literature.
So what we did, we did anundertaking that started with a
discussion that Marty and I hadyears ago about how we're
defining this thing.
We all think we know Because,again, yes, you tell people,
you're having a conference ondefining dysphagia and it sounds
like a no brainer.
(01:23):
Everybody knows what we'retalking about.
But talking to Marty andtalking to clinicians, and then
diving into the literature andGiselle was really instrumental
in helping us figure out how westarted to look at this we
realized that we're all over theplace, at least within the
research literature.
There is no agreement amongstresearchers, amongst clinicians,
(01:45):
amongst professionals fromdifferent backgrounds as to what
this thing is that we're alltalking about.
Again, we all think we know,but it became very clear we
don't.
Tim Stockdale (01:56):
What sort of variability did you see Like?
What kind of represents maybesome of the extremes?
Debra Suiter (02:03):
Do you want me to go so?
Giselle Carnaby (02:08):
In the literature, the extremes could
be as simple as just a statementof swallowing difficulty to a
specific scale that very fewpeople use.
There was one that I actuallyhad to look up because I'd never
heard of, and that even in asingle publication, one group of
(02:31):
people might define dysphagiasix different ways.
So which one is it?
So we don't even agree withourselves within our own
publications, which was kind ofstartling even agree with
ourselves within our ownpublications, which was kind of
startling.
Tim Stockdale (02:51):
What do you think some of the implications of
this are within the research forthose who don't have PhDs, like
the three of you?
Debra Suiter (02:57):
I don't think that helps us, by the way.
Martin Brodsky (03:02):
I think, at the very least a common language
with a common understandingwithin healthcare and by
healthcare I'm going to be asbroad as the person who answers
the phone and says and hearsfrom the patient that they have
dysphagia all the way up to andpast the healthcare provider who
(03:23):
gives that care in any form,all the way to the third party,
payer and government officialsrelated to Medicare.
In defining what's going to bereimbursed based on what and
what, coding, et cetera, etcetera.
It is a ubiquitous problemacross the entire domain that is
swallowing disorders.
Tim Stockdale (03:45):
I'm thinking of something.
Yesterday I had an internalchart audit at one of the
outpatient clinics I work at andthey have a special place for
everything, and I had mydysphagia diagnosis there, my R
code, but it wasn't in the rightplace and so, because it wasn't
in the right place, it didn'tget populated onto the
certification letter that thephysician signed and it was sent
back and it was something thatI needed to resolve.
And so, because it wasn't in theright place, it didn't get
populated onto the certificationletter that the physician
(04:05):
signed and it was sent back andit was something that I needed
to resolve.
And so, just thinking of that,if you don't have a diagnosis,
insurance is not going to payfor treatment, you're not going
to pay for treatment.
And so I think justunderstanding what that is, so
that the physician can say, well, yeah, they do.
When they sign theauthorization or an insurance,
(04:26):
companies don't have somethingto contest it with, it makes a
lot of sense.
So just, you know the sheerimportance from a payer source.
I mean, that's not the biggestthing, but that is a pretty big
thing.
Giselle Carnaby (04:38):
I mean, even when you're talking our codes,
it's a symptom code, not adiagnostic code.
Tim Stockdale (04:43):
Okay talking our codes.
Giselle Carnaby (04:44):
It's a symptom code, not a diagnostic code.
Okay, so the implication forfunding and for reimbursement is
different for what we do, andthen what constitutes that our
code?
And it's different in differentclinics.
So some symptoms we recognizeas associated with swallowing
disorders where others don't,and so that's part of the
(05:05):
problem with definition.
Yeah, just even using that codebecomes variable, and that puts
us at risk of not being paidfor our services.
Martin Brodsky (05:17):
In talking about .
When you speak with NIH programofficials, you'll note that
dysphagia does not have a home,that is, that swallowing and
swallowing disorders is notexpressly stated in any mission
statement across all of theinstitutes at NIH, to the point
(05:41):
where program officials say,uh-uh, that's not us, that's
them.
And now it's a little bit ofpast the buck as to what it is
that's going to be the focus ofthe grant.
So, for example, manyclinicians in speech-language
pathology, many researchers inspeech-language pathology, in
(06:05):
speech-language pathology, thinkthat speech-language pathology
and audiology have a home, ifyou will, within the National
Institute for Deafness and OtherCommunication Disorders, or
NIDCD.
That is, in fact, not the case.
It's not that the professionhas a home, it's that the topic
has a home, okay, so I want todraw the distinction
(06:26):
specifically within swallowingdisorders.
A person, a researcher, who putsin a grant that deals with
stroke up in the air immediatelyis going to be NINDS.
In neurological disorders, itcould be NIDCD or, if they're
old enough, it could be theNational Institute for Aging,
(06:46):
nia.
That's the issue that we facewhen it doesn't have a home.
Okay, and let me be very clearMany disorders, many diseases
don't have a specific homewithin NIH.
Diseases don't have a specifichome within NIH.
It depends on how you write thegrant, but not having this well
(07:15):
understood certainlycontributes to the problem in
not knowing where it exists.
Tim Stockdale (07:16):
So just real fast back to somebody who's
listening and might not evenknow.
You know what?
What is an R code?
What is?
What is a?
G code, thinking of the ideathat, if we're, when you're
inputting a diagnosis, you'retrying to get treatment for
somebody who you believe hasdysphagia that's impacting their
life in one way or another,there's an ICD-10 code that you
have to put in to tie to that.
(07:37):
And so, stepping back evenfurther, giselle mentioned an R
code.
So what's the difference thenbetween an R code and maybe a
more pure diagnosis code?
Giselle Carnaby (07:49):
So R is symptom only, okay, which means it
extends from another diagnosiscode.
So there has to be a fulldiagnosis code.
So for any one patient, thediagnosis code could be specific
for stroke, or it could bespecific for adenine cancer, it
could be specific for als excuseme.
(08:11):
And so then, depending on thesymptom, there's an associated r
code, okay, so, um, for example, say the diagnosis is unknown
and they can't work out what itis Like.
Let's say it's a collagenvascular disease and we haven't
typed it appropriately, so thatpatient doesn't have a clarified
(08:34):
diagnostic code.
But they may have a whole hostof R codes, right?
And so that makes it reallydifficult in terms of if you're
trying to bill at that level,your billing codes follow your
coding system and billing for anR code is less than you'll get
for a diagnostic code.
Okay.
Tim Stockdale (08:57):
Very interesting.
All right, Marty, sorry, Ididn't mean to interrupt you.
Giselle Carnaby (09:01):
Yeah, this thing about defining this term
has specific implications, notjust for us all being on the
same page, which is also reallyimportant, but also on how we
get paid and how we identify ourservices and how we demonstrate
that our services are ofsignificant impact.
(09:23):
Okay, so clinically, yeah, itmakes a big difference.
Tim Stockdale (09:33):
So we have a better idea of what we need to
do.
What have been some of thebarriers in being able to get
toward this goal, thisundertaking?
Debra Suiter (09:47):
toward this goal, this undertaking.
Well, I think that the biggestbarrier that we've identified is
just realizing that, thediscrepancies and the fact that
so many of us are looking atthis thing called dysphagia in
so many different ways and a lotof us are very wedded to those
beliefs.
So trying to take a step backand to understand that we need
(10:09):
to reach some common ground, Ithink, has been an issue
Certainly.
I think the other thing that werealized when we took this on
is, again, we thought this was avery simplistic sort of task
come up with a definition fordysphagia and, of course, we
thought we could accomplish thatin a fairly quick manner.
And what I realized, one of thebiggest takeaways from this
(10:32):
conference that we had a coupleof months ago is we spent three
hours discussing a frameworkwhich was necessary.
We needed to take a step backand come up with common ground,
but we couldn't even agree onthat.
So this is a.
I think it's going to be a stepback and come up with a common,
with common ground, but but wecouldn't even agree on that.
So this is a.
I think it's going to be a muchlonger process than than any of
(10:52):
us realized at the start ofthis.
Giselle Carnaby (10:57):
I agree.
I think I want to align it witha song and call and say it's a
climb, we are at the beginningof this and that's what we've
come to realize and, yeah, allthe hard work has yet to happen.
And so I think one of the thingswe can take away from the
(11:19):
conference we had is that thisis a call to action, not just
for us but in the future, to getpeople moving beyond where we
are now.
We have this mandate thateveryone agreed.
Yeah, this is a good thing, weshould be pursuing this, but
then, beyond that, how are wegoing to do that?
So that framework is reallyimportant.
(11:41):
But then, beyond that, how arewe going to do that?
So that framework is reallyimportant?
And then, beyond that, divideand conquer into smaller, more
digestible chunks as we moveforward to develop it.
Martin Brodsky (12:08):
It's going to take more pretty solid product
in terms of many disciplines inagreement on how we move forward
, that in the end willstrengthen every single aspect
of funding, of diagnosis, oftreatment, of the way that we
(12:30):
think, of the way that weapproach, maybe just even a
solidified approach to research,and that we're all finally on
the same page and we can allthink about it very similarly.
Giselle Carnaby (12:44):
And I mean I think also, tim, you know, a lot
of the time when I'm out andabout talking to clinicians and
people who are just you knowthey're slogging away out there.
I hear you know we're not wellrespected, what we're doing
isn't well respected, it's notwell appreciated.
I don't feel like they takewhat I say seriously enough.
Part of that comes from thefact that we're delegated to
(13:07):
symptom-based approach ratherthan, hey, we're going to affect
the change in something thatthat patient's experiencing that
is life-altering, and that'swhere moving this from R to
something more like G is reallyimportant for the professions
that work in this domain.
Martin Brodsky (13:29):
Dr Greg Jyka, who is the neurologist who
joined us for the past two years, made a point and this one kind
of sticks with me quite a bitright now, just for background
of those who were not present inthe conference and not aware of
his work.
His work has primarily focusedaround dementia and issues
(13:52):
associated with mild cognitiveimpairment, and he has been on
task forces within the groups ofneurology and others who have
addressed what exactly is mildcognitive impairment, and he was
one of the foremost leaders inspearheading how to get there,
(14:13):
first and secondly, moving fromthe R to the G code, the R to
the G code.
And one of the things that hebrought to light was that in
order to do that, you needbuy-in from physicians and,
broadly, the American MedicalAssociation.
(14:34):
In order to do that, slpssimply are not going to be
(14:55):
successful by themselves.
That's straight up, no mincingwords here.
We need partners in this, them.
We need to be on the same pagewith them, we need to move in
parallel with them.
Certainly, we can havedisagreements, and disagreements
are going to make us better,but in the end and at the end
there's going to be acollaboration that takes place
(15:17):
where all groups are on the samepage.
That takes place where allgroups are on the same page, and
you're going to have people whocan take this to the AMA and
say it's time we need to movefrom the R to the G.
Tim Stockdale (15:31):
There's.
I've kind of have a one trackmind in this that I'm looking
back at the systemic issue, likeyou mentioned, the idea that
speech pathologists are notgoing to do this on their own.
We need partners to be able toappeal to the AMA to make
something happen.
But also I step back and thinkabout just our training Again.
I also see, like theDunning-Kruger and everything,
(15:54):
you know a little bit and youthink you know a lot, and how I
believe we're trained in speechpathologists.
We learn so little about somuch and so we have very little
depth.
And so when it comes tosomething like dysphagia which,
as we all know, has tremendousimplications on the individual's
health, wellbeing, quality oflife, so many different areas
there is so much depth to itbecause it involves interplay
(16:17):
between various body systems.
If you get an individual who's80 years old and they're healthy
but their functional reservesaren't what they were when they
were 20 years old and they getsick, and how that can cause a
transient, so to speak,manifestation of dysphagia, but
just the complexities of this.
And so I think one of thethings that we have going
(16:37):
against us right now is ourtraining, just our training, and
being able to give us thefoundation to better understand
this and to better understandthe impact of it on health,
cause we're talking about movingit from a symptom to something
greater than that, to to to acondition it sounds like.
But if we don't understand howall of these things interact,
how are we going to be able toadvocate for that?
(16:59):
So I see the benefit from one,from a credibility standpoint,
if we partner withlaryngologists and
gastroenterologists andneurologists and so on going
into this, but also from theperspective, too, of getting
their understanding of how thesethings tie together.
So that need for a cohesive webwhere we can all communicate
together, for a cohesive webwhere we can all communicate
(17:26):
together.
What is interesting to me?
At this conference, for example, the majority of individuals
were speech pathologists.
How do we get that buy-in fromphysicians?
How do we get more physicianscoming to the table and being
willing to discuss this so wecan move forward with more
momentum?
Debra Suiter (17:40):
Well, I think the thing that really stood out to
me is you're looking at thethree of us that organized this
conference.
We're speech-languagepathologists and certainly,
while we reached out to ourphysician colleagues, having
somebody who's going to championour cause on the physician side
of things is we just need tofind somebody who's invested
(18:01):
enough to do that and it's Imean, it's sad to say we should
be able to advocate forourselves, of course, but you're
right, we need that physicianbuy-in and yeah, and so we've
included them.
Giselle Carnaby (18:13):
We deliberately included them in our
conferences, but, again, wedidn't have nearly the
representation from from thephysicians that we did from
speech and some of that, to behonest with you, is a meeting
logistic issue as well, becauseI mean getting physicians time
(18:34):
means providing cme credit andto have physicians advertised
for us, and that you know Romeisn't built in a day.
I mean, we did get physicianrepresentation at that
conference.
In fact Dr GK spearheaded it.
So you know we do have somedepth on the bench, one might
(18:58):
say, but that depth certainlyneeds expanding and that's food
for the future, Absolutely.
Martin Brodsky (19:07):
I think there's a little bit of a culture among
the societies related todysphagia in that I think every
single one of them, the majorityof the attendees to any one of
those conferences, the majorityof the members to those
conferences sorry to thosesocieties are speech language
(19:27):
pathologists.
So there is a culture that'spart of this.
That's not to say that you knowacross the societies.
To give you some idea, dentalis a gigantic part of the
Japanese Society for DysphagiaRehabilitation.
It is not a giant part, exceptto say that we have dentists
(19:48):
from Japan who are members ofthe Dysphagia Research Society.
There is a culture here andit's within country, never mind
across countries and around theworld.
And it's within country, nevermind across countries and around
the world.
So we made very big attempts togetting people who wouldn't
(20:11):
even ordinarily attend DysphagiaResearch Society in North
America.
We reached to gastroenterology,neurology, physical medicine
and rehab, intensive care,pulmonary and critical care
medicine, ent.
Every one of those were notonly on the invite list but they
were present.
So yeah, as Deb and Gisellehave said before, the depth is
(20:34):
certainly there.
I think what we need to work onright now is that there's a lot
of interest by virtue of thosefolks to be there.
I think we need to work on thenumbers and I think that's part
of the problem.
It's not just what we're doing,it is more broadly the way that
the culture has evolved,related to swallowing and
(20:56):
swallowing disorders.
And let's bear in mind I'm notgoing to throw anybody under the
bus here, in fact I'll defendit Dysphagia, as has been
brought to light inspeech-language pathology, only
began in 1992, when it wasrecognized.
So here we are, 32 years later.
Okay, we are young.
(21:18):
There's a lot more to grow.
Tim Stockdale (21:24):
Some of us were there when it evolved, I was on
my third grade playground man.
A lot there, a lot there.
It's something that I think isvery promising.
So, dr Jyka, he's a colleagueof Dr Suter, right, okay so, and
(21:50):
he was, you know, not justcoincidentally instrumental in
the advancement of definingdementia or mild cognitive
impairment.
Forgive me, I'm going to misssome of the nuances of that.
But so you and what you've beendoing, deb, have had enough
credibility and enough influencewith him to be able to get him
on board with this, which Ithink is great.
And it speaks to the potentialthat is there, for when speech
(22:11):
pathologists get a lot of depthin dysphagia and really, really
understand the nuances of whatwe're talking about, that we can
get buy-in from others outside.
And so I guess that's one thingI'm taking away from that.
But also I'm thinking, you know, oropharyngeal dysphagia as a,
as a physiological concept Imean that exists in our
(22:33):
wheelhouse, like that's ourthing.
If you're talking aboutesophageal dysphagia, it's
primarily gastroenterology, andif you're talking about, you
know, the anatomy and physiologyof the upper aerodigestive
tract, at least the pharynx andthe larynx, and you're, you know
, otolaryngologist, but when youget into the physiology of it,
that seems to be something thatprimarily resides with us and we
(22:53):
are.
We're at a disadvantage becausewe're not physicians, and I'm
not saying that that shouldn'tbe there.
I think we can do it.
I think we can do a great job.
I think there's some thingsthat we can certainly tweak in
education to become better, butconsidering it's just been since
1992, I mean that's fairlyimpressive.
I think that's fairlyimpressive that we've been able
to get as far as we have gotten,and so I don't think the
(23:15):
effort's unnoticed.
Giselle Carnaby (23:16):
I think, tim, you also need to realize that
other countries are doing thingsdifferently.
So at the moment, you can takea specialty degree out of
Belgium and you can become adeglutologist.
You can become a specialist inthis area.
I think, with a little crystalball going forward, you're going
to see more of that.
Tim Stockdale (23:35):
Yeah, I agree.
Giselle Carnaby (23:41):
And that, by the way, is not an SLP degree.
Physicians are taking thatdegree too.
Tim Stockdale (23:46):
Really Now, if that does catch on, how do you
see that influencing this all inthe future?
Giselle Carnaby (23:58):
And I guess I mean that's so potentially so
far.
Maybe it's hard to speak to.
Well, if we're able to, as agroup-disciplinary group, get to
a definition, I think that justensures that pathway even more
absolutely so.
Tim Stockdale (24:09):
We've talked about a bit about what we need,
why we need it.
We've talked some about how doyou think we're going to get
there and the challenges thatwe're going to have.
Let me me just if you were to.
We've talked about differentnuances to that, but if you were
to summarize in your mind howyou think we're going to get
there and maybe one of theprimary challenges, could I just
(24:30):
hear a little bit like a briefsynopsis for each of you?
And if you wouldn't mind, Ishould have asked you to do this
at the beginning.
When you say this, just say whoyou are the first time, so
people know your voice.
Debra Suiter (24:43):
You do this at the beginning.
When you say this, just say whoyou are the first time, so
people know your voice.
Sure, so I can go first.
It's Deb Suter.
So, in terms of how I thinkwe're going to get there, I
think we've hit on a lot of italready.
I think we need we need to getbuy in from the, the groups that
are the key stakeholders here,from the groups that are the key
stakeholders here, and one ofthe things we haven't mentioned
(25:04):
in this discussion is we need toget buy-in from patients and
from patient advocacy groups aswell, and third-party payers.
So, I think, getting the rightplayers to the table and again,
we're very proud of the factthat we did have as many
different disciplinesrepresented at this conference
and the conference we heldpreviously but getting that
(25:25):
buy-in and then realizing thatwe have a huge, huge task ahead
of us and breaking it down intosmaller parts and coming up with
focus groups that are going tobe able to take on that task.
It's a task that's bigger thanthe three of us and we need to
start recruiting more people toget involved.
Tim Stockdale (25:49):
Okay, thank you.
Thank you.
Who wants to go next?
Giselle Carnaby (25:54):
Me Okay.
So this is Giselle Carnabyspeaking.
So I see this as a multi-yearaction, and so I think what
we're looking at is thedevelopment of working groups on
specific aspects of this sothat we can start to break down
that categorisation that webegan to investigate in this
(26:15):
first conference.
I think we're going to have towork on partnerships and their
partnerships with othersocieties, not just dysphagia
society, but also with themedical societies at different
places that have an investedinterest at the moment in this
symptom code and what it wouldmean for them if this changes
and advances.
And I think, along with that,you're going to need to start to
(26:39):
see a regular yearly review ofprogress of those groups coming
back to a central body andthat's how medicine has done
guidelines and buildingguidelines and building from R
to G codes, and I think we'regoing to have to follow the same
tried and true pathway.
Martin Brodsky (26:58):
Well, I'm Marty Brodsky and I agree with both of
their perspectives, and I'lladd perhaps one more, and that
is just to say that it's goingto take all of us working
together.
It's not one group, it's not oneprofession, it's not even one
country, but it's all of usworking together toward this
(27:20):
common path.
So you know, I'm aware that atthe European society for
swallowing disorders conference,there has now a combined or
coalition of what is now theWorld Dysphagia Coalition across
five groups around the world.
Who are these societies thatexist is one coalition across
(27:57):
these five major groups ofmembership, country-based, or at
least continent-based societiesrelated to dysphagia.
That's a step in the rightdirection, and now we have a way
, at least in this consolidatedformat, to bring all of us to
the table a little bit easierthan we did even moments ago.
That's what this is going to be.
It's going to be consolidation,it's going to be ultimately
(28:17):
consensus and, make no mistake,even though we're talking about
professions and countries and soforth, it's still going to be
governing bodies like theAmerican Medical Association
that are also going to have tobe a partner in this.
It's just a little bit laterdown the road, once we have
something a little bit moresolid, that's evidence-based,
(28:39):
that we can present them as aunified format.
Tim Stockdale (28:43):
I mean, you look at such an evolution and thought
in this, when you think of justhow do we define dysphagia,
versus the more you're digginginto it and you're looking at
all the nuance and you'relooking at all the things that
have to happen for us to getthere to a unified definition, I
think it's extremely difficultto see, if not impossible to see
, the magnitude of how many notsmall steps, but just how many
(29:06):
steps it takes to get to this,and so it looks like it's
unfolding really beautifully.
To me, there's been a precedentset by others within this, so
there's a pattern.
There are people who areinvested in this.
It sounds very promising and Ireally personally appreciate
that in a number of levels.
I want to.
(29:26):
So you, marty, and this is foranybody, but you had mentioned
it's going to take all of usworking together.
I'd like to really wrap up withso, for listeners, for those
who are here listening to thisin whatever setting they might
be in, what does all of usworking together look like?
What might it look like forthem?
Martin Brodsky (29:47):
What might their actionable steps within this be
.
It's interesting you mentionedthat because, as you were
talking just now, I was thinkingabout what are the steps?
We haven't even defined thoseyet.
I don't think anybody has.
This is, in every aspect, adynamic situation that is
responsive to the informationthat's gathered at every single
(30:09):
point.
So, to know where we're goingto be tomorrow sure, we're
finishing up our scoping reviewwe need to put together a
summary paper for what occurredat the conference, and both of
those papers, in and ofthemselves, are going to suggest
steps to move forward.
Whatever happens in those nextsteps will dictate where we go
(30:33):
next.
I don't have those answers.
I don't think anybody does froma broader perspective.
Tim Stockdale (30:43):
From a broader perspective and I know I I beat
this dead horse all the time butjust the idea of of us
continuing to build credibility,to not just credibility Let me
take that back Us building thedepth of our knowledge.
Building the depth of ourknowledge within dysphagia,
within the populations that wework with, understanding the
(31:05):
etiologies that lead to what isthis symptomatic diagnosis of
dysphagia right now.
Better understanding that, Ithink, is going to help us to
better understand the reason forthis, why we need it.
It's going to help us to buildcredibility.
But also, I mean, what aboutthe idea of what you are doing?
You're raising awareness of it.
I mean, how many people, just inthe last three months, through
(31:28):
your conference that you allhave held, this has been placed
on their radar and now they'relike I didn't even know that was
a problem, but now they knowit's a problem and they have
some sort of thing that'sdriving them with purpose to get
this accomplished.
And so just, I don't know.
A couple of thoughts.
I like to oversimplify thingslike that, but I know it's a lot
more complicated.
Martin Brodsky (31:50):
I want to come back to your credibility comment
and I don't want tounderestimate at all the amount
of credibility we already have,you know, since let's just call
that that 1992 benchmark.
Okay, 32 years of research, 32years of experience, multiplied
by the number of clinicians andresearchers that are part of
(32:12):
that.
There's credibility there.
What we're trying to do, Ithink, is refine and get better
reimbursement and get betteracceptance across the healthcare
professions for what thisdisorder is.
I think part of what you justmentioned in terms of more
(32:33):
people, more people now beingaware, that was a huge first
step in all of this.
That was this year.
It was awareness.
It was bringing everybody on.
It was getting everybody ontothe same page in some form of
consensus.
That's a giant step.
Think about the hierarchiesthat we've all learned as
(32:55):
clinicians with regard tocognition Awareness and
sensation come first.
If you don't have that, nothingelse matters.
That's where we are and it justbuilds from here.
Giselle Carnaby (33:10):
Love it.
Yeah, I just want to echo alittle bit of that but also put
something in people's minds.
I mean, I see what we're doinghere as much like when the World
Health Authority created theICF.
It's just as complicated, andthey did it over a series of
years and developing thisconceptual framework and then
(33:31):
slowly building the frameworkout to the different definitions
of different components thatcontributed to that.
This is kind of where we'regoing, and you know we can take
lessons from other people, butall of those people that
contributed to that framework,from a multitude of different
professions, that's us.
Tim Stockdale (33:55):
Very good.
Well, thank you everybody.
Again, we have Drs Carnaby,Brodsky, Souter and myself.
Thanks for listening.
If you have any questions afterthe fact, don't hesitate to
reach out to me.
I can kind of forward theemails or contact as needed, and
I guess that's it.
That's it for today, but thisis just one little tiny baby
(34:15):
step and the mammoth elephantwe're trying to eat here.
How's?
Giselle Carnaby (34:21):
that for an outro, I don't know man, I got
stuck.
Tim Stockdale (34:24):
But anyway, thank you all for being here.
It was great Appreciate seeingyou and hopefully we'll talk
soon, thank you.
Thank you and hopefully we'lltalk soon.
Debra Suiter (34:30):
Thank you.
Tim Stockdale (34:31):
Thank you.
As a reminder, our episodesponsor is Phagenesis, maker of
Phagenix Neurostimulation Systemfor pharyngeal electrical
stimulation, not to be confusedwith neuromuscular electrical
stimulation.
Please visit our sponsor atphagenesis.
com to find out more.
Thanks for tuning in to anotherepisode of Swallow the Gap.
(34:57):
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I hope this episode has beenbeneficial to your practice and
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