I’m Aware That I’m Rare: PHenomenal Hope 2023 (453)

the phaware® interview

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.

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