PHenomenal Hope 2023 - phaware® interview 453
Jan 30, 2024
Drs. Patricia George and Harrison "Hap" Farber from Team PHenomenal Hope
discuss takeaways and learning from PHenomenal Hope 2023. This symposium
offered a combination of oral presentations, expert panel
discussions, and poster sessions in an environment that encourages
collaboration and a deeper exploration of patient-centered
research.
They also discuss Team PH's 2024 Research
Award program, looking for topics that will help expand access
to care and improve clinical status by looking specifically for
projects in the topic areas outlined at the PHenomenal Hope 2023
research meeting.
Steve Van Wormer:
Hey everyone, Steve Wormer from phaware global association. I'm
here with Dr. “Hap” Farber and Dr. Patty George from Team
PHenomenal Hope. We wanted to have a conversation here about an
event that they held recently called PHenomenal Hope 2023, which
was a medical conference focused on knowledge, research and
advocacy in pulmonary hypertension that was held in Boston. I
thought they could share some of the takeaways and learnings they
had from this medical conference. So thank you both doctors for
joining.
Patricia
George, MD:
Thanks for having us.
Harrison
"Hap" Farber, MD:
Thanks for having us, yeah.
Steve
Van Wormer:
So, this was a great event and there was a lot of turnout. Tell us
a little bit about just people that might not know what that event
was focused on and some of the topics and what were your
takeaways?
Patricia
George, MD:
Well, it was our first medical symposium. As you know, Team
PHenomenal Hope started in 2012, so over 10 years ago, and never
did I ever imagine that we would have a medical symposium. I'm so
proud of what we achieved specifically with Hap taking leadership
and having this long-term vision. He can tell you about it, but
this didn't just come up on a whim. He's had this vision of having
this conference for a while. He and a team of people really pushed
this.
It was special because the point of this conference was to talk
about really important topics that we all know are important in the
field, but they don't always get the attention and airtime so to
speak, that they deserve. So this was a great forum and people were
so engaged. The topic areas included things like diversity and
inclusion and registries and in clinical trials. We led off with
that with amazing talks in the morning and at noon, by Hap's former
fellow, we talked about: unmet needs in patients with pulmonary
hypertension, substance abuse and PAH, what is a PAH disease
modifying agent, patient engagement strategies in clinical trial
design and improving data quality. These were the key topics and
there were people there literally from all over the country, but
also guests from Europe, as well.
Harrison
"Hap" Farber, MD:
I think the thing that's important to point out about the topics
are they were topics that aren't usually discussed at any kind of
medical or PH symposium, which are usually strictly
state-of-the-art research, stuff like that, molecules. This was
stuff that really was sort of directed towards gaps and needs that
we have in patient care, which made it unique to start with. I
think people really got into this idea that it was very different
than other symposia.
Plus, we were good in that we had speakers who really were good and
engaging and the audience was engaged. We had a panel discussion
after each section that got really sort of heated and engaged. I
think to me, aside from the fact that we're talking about things
that we don't really talk about, was the fact that, to be honest,
my worst nightmare was the fact that nobody was going to show up.
But to my surprise, the place was full. We had an amazing
turnout.
Steve
Van Wormer:
For people that might not know, I believe it was it a year ago,
less than a year ago, you took over the reins, as Patty said, of
Team PHenomenal Hope, and then you come out of the gate with this
end of year program. She said you've cooked this up for a long
time. So that's been something that you'd wanted to get to with
Team PH or just in general?
Harrison
"Hap" Farber, MD:
Patty and I, usually in February, I have a house in Crested Butte.
We go to Crested Butte and we strategize. We've been discussing
this for I don't know how long, and Patty kept saying it'll never
happen. I kept saying it's going to happen, and it did.
Patricia
George, MD:
I want to also say one of the other things about these topics and
how we emphasize they're important topics that aren't often
discussed, especially altogether in a forum, it really mirrors what
we do on Team PHenomenal Hope. Like everything with our
organization, we never tried to mirror what's already being done in
the field. We have several nonprofits in the space. We have
phaware, PHA, Team PHenomenal Hope, but we've never tried to beat
what another organization does.
We try to always find gaps and places where we can help people
living with PH. What can we do differently? How can we add to the
field? So, I think that this was a great expression of that through
this medical symposium and quite complimentary to the day before
the TUFTS Pulmonary Hypertension update. I had a phenomenal two
days.
Steve
Van Wormer:
I think it was great in the sense that I personally have went to a
number of medical or medical slash patient forums. Like you say,
just on a lot of these topics were ones that I just haven't seen as
an audience member. Some of these speakers after they gave some
really engaging and interesting things that we've never really
explored, we asked a number of these people to record some of these
sessions for future podcasts to keep this information, to get it
out to patients as well, which is great. So let me ask you this. Is
this something that now that you have one under your belts, is this
something that would be hopefully a longer term focus to do? I
won't say necessarily yearly but what's the kind of future hope for
this?
Harrison
"Hap" Farber, MD:
Based on the feedback that we got from the first one and from the
reception we got in the PH community, to be honest, I'm already
working on next year. The problem I think is for good or bad, the
first one was so good. We set the bar at a level hopefully we can
attain again. I'm being totally honest here. I did not expect the
bar to be that high, but it is now. So now there's this expectation
if we do it again, we've got to be at least as good.
Steve
Van Wormer:
How did you come up with some of these topics? Are these just
things that when dealing with patients or other peer doctors that
you talk about and you're like, "Hey, why don't we peel the onion
back on this?" I'm just wondering how some of these things came to
be.
Harrison
"Hap" Farber, MD:
Some of them came up because to be honest, Patty and I and two of
our fellows wrote a paper about the lack of ethnic and minority
inclusion in pulmonary hypertension trials and in registries. So
that was one obvious topic. Another, because of the emergence of
newer drugs, is what are we really doing? Are we modifying the
disease, which is I think just basically a marketing ploy, but
anyway, how do we get people engaged in clinical trials? Nobody's
ever talked about that because trials have to be representative
because remember, the results you get, you apply to everybody,
whether the trial is representative or not.
Then, the other ones just sort of fell into place. We were lucky in
that in areas in which there were no data, which was pretty much
almost anything we talked about, the sponsors were good enough to
put together these Delphi committees, so that even if there were no
data, you could sort of get an opinion as to what might or might
not be important. Then you could argue about them. It was
great.
Steve
Van Wormer:
These are all unique in standalone topics, but they all also kind
of go together like an erector set, because if you're talking about
trials and then you're like well, who's in these trials? Then we
need a diversity of patients, and then how are we engaging those
patients? I thought it was a very interesting step-by-step kind of
process.
Harrison
"Hap" Farber, MD:
No, I agree. I think as you said, they were separate, but they were
linked.
Patricia
George, MD:
One of the things that I found that I thought was really fun, and I
guess this goes to feedback, but just the vibe of the conference to
me, the symposium, to me, felt a little different than your typical
medical conference. What's really unique about the PH community,
we're all friends at this point. So luckily you get to see your
friends and get together and hey, how you doing? Everybody just
really nice people.
But what's really cool is when they came together in this meeting,
you just kind of felt a passion from people for really wanting to
make a difference. Not that you don't feel that at other meetings,
but I don't know. It was just really engaging in a way. When there
were these discussions and someone would present a topic, then
there's a panel and then there's audience members, you just got
this feeling people just wanted to contribute or say something. It
seemed like these topics really resonated with people. It was just
really satisfying. I felt like I was a part of something and not
just attending something.
Harrison
"Hap" Farber, MD:
You almost had the feeling at times that, to expand on what Patty
just said, is that people had sort of bottled up these ideas and
questions for so long that they just couldn't wait to get them out,
which I thought was pretty cool.
Patricia
George, MD:
One of the things that I've been talking about with Ann, our lead
nurse coordinator from here at National Jewish who went with me to
the conference is what we found was, wow, the things that we
struggle with in terms of delivering care to patients or patients
who might struggle to get to appointments, just the issues that we
see, copays, all the stuff that we struggle with in terms of
providing adequate support for patients, whether it's financial,
whether it's helping them through critical care. These are common
themes that everybody's dealing with, that everybody has to face in
their clinics. So when you get people together and actually can
discuss it in this forum, I think it's helpful because you end up
talking to the person next to you and say, “How do you guys do
this? And what about this and how do you approach that?” I think
that was really cool.
Harrison
"Hap" Farber, MD:
In most of these topics that we had, there really is not good data
or even any data at all. So everybody's sort of giving their
opinion of how they do it. Then some people are shaking their heads
going, "Yeah, that's how I do it." And other people would go, "No,
that's not right." So it was good in that it really does create a
tremendous amount of discussion, because you can't say to somebody,
"Well, the data says do it this way."
Steve
Van Wormer:
To that point, when you do future conferences like this, symposiums
like this, do you think that you will keep these main topics, we'll
call it, because there's not data to keep going further and
exploring and building up that data, or find new areas that are
still unmet and needed in this PH puzzle?
Harrison
"Hap" Farber, MD:
Both.
Patricia
George, MD:
Two of the cool things that came from this conference... Number
one, these topic areas are actually the topic areas that we're
asking people who are interested in submitting a letter of intent
for our research award to submit. We have a PHenomenal Hope Research
Award, phenomenalimpactresearchfund.org. Every year we award a
$50,000 research award. LOI submission is going to be due Friday,
March 8th, and it is in these topics that came from this
conference.
We're putting our money where our heart is here and we now want to
fund these important topics. So if anybody has something related to
those topics, those are what we're really looking for in this
year's research award. The way the process goes is people submit
LOIs, it's pretty simple, by Friday, March 8th, and then those are
reviewed and the finalists will be notified about two weeks later,
and then about a month after that, the full grant application is
due.
Then the award winner will be announced probably in May. It's a
$50,000, no indirects from Team PHenomenal from our fund, but it's
also the things about this research award that's special is it's
international, so it's not just for the US, people can apply. We've
had people apply and win from abroad, and it also is not just for
doctors or PhDs, but nurses, nurse practitioners, respiratory
therapists. If you have a good idea, you can put that idea
in.
Harrison
"Hap" Farber, MD:
Well, actually, the woman from Brazil who won one time was a
lawyer, an incredible idea, just amazing. Because she had had a
family member with pulmonary hypertension, she got totally into
this.
Steve
Van Wormer:
There you have it. We will see deeper dives into these topics and
get more data and for patients and the betterment of the whole
disease state. Patty, Hap, thank you so much for putting this on,
for what you do every day for patients in the community, and we
look forward to the next one.
Learn more about
pulmonary hypertension trials at www.phaware.global/clinicaltrials.
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