Going To Glasgow: ISPOR 2025

Speaker A: Welcome to let's Talk Rare, a monthly podcast from Partners for Access where we discuss news, views and the latest insights from the orphan drug and cell and gene therapy world. Welcome to let's Talk Rare. We're continuing our two part look at pharmaceutical conferences and as ever, I'm delighted to be joined by Georgie Rak. Hi, Georgie.

Speaker B: Hi, Erin.

Speaker C: Great to be here.

Speaker A: Jordi, uh, it's great that you're with us for lots of reasons, but also one of the reasons is because you really are P4. As conference queen, you've been to a lot of conferences. Why are they so important to us?

Speaker C: Oh my gosh, what a question. It's a chance for Partners for Access to showcase our expertise in the rare disease world. Conferences are a, ah, real chance for us to show up as humans, not just professionals really. Showcasing our thought leadership, our expertise, having real conversations in person that build genuine trust. Uh, and I suppose it's um, it's a platform where knowledge meets connection.

Speaker A: That was brilliant. That is exactly what, what they mean to us. So I'm delighted to be joined by two of my colleagues and we have Sam Morrison. Sam is a regular to the P4A Let's Talk podcast. Welcome, Sam.

Speaker D: Thank you very much for having me back, Owen.

Speaker A: But it's also delighted to have a newbie. IRO and iro. Welcome to let's Talk Prayer.

Speaker B: Thank you very much. I'm very excited to be joining Eero.

Speaker A: Tell us a little bit about yourself.

Speaker B: Um, I'm a consultant at Partners for Access. I've been working here for about three years and I've never done a podcast before, so I'm very much looking forward to it.

Speaker A: Owen, we're going to be very, very gentle with you. So gentle, in fact, we're going to do a little icebreaker. Huh? How does that sound?

Speaker D: That's great.

Speaker A: What I'm going to do is I'm going to give you, uh, two options, an either or icebreaker. And I'd like you to tell me your preferred answer, if that's okay. So we'd start by saying town or countryside, and you'd say, ooh, town.

Speaker B: Uh, I like having many different options.

Speaker A: Surprise me on that one. Okay, let's go through them and see what you say. Autumn or spring?

Speaker B: Spring. I do prefer the sunshine.

Speaker A: Being the oldest or the youngest person

Speaker B: in a room, I would have to say the youngest because you have a lot to learn from the other people in the room.

Speaker A: Hearing that wisdom. That is wisdom. That's almost like the oldest person in the room speaking, being the youngest person. Anyway. Um, reading or an audiobook?

Speaker B: Reading. I don't think there's anything that can replace the feeling of a book in your hands.

Speaker A: Absolutely. Movie or theater?

Speaker B: Movie. Um, you can enjoy popcorn more freely.

Speaker A: Good answer. Um, you're eating some really delicious french fries. Do you use mayo or ketchup?

Speaker B: Ketchup. 100%.

Speaker A: Shopping online or in person?

Speaker B: Online.

Speaker A: Home cooking or eating out?

Speaker B: Home cooking. I do love to cook. I do love to bake and uh, something that I one of my hobbies. So, yeah, home cooking, absolutely.

Speaker A: Just like the ideal person really. Um, okay, we'll find out with this one. Romantic comedy or exciting thriller?

Speaker B: Romantic comedy.

Speaker A: And, um, Apple or Android?

Speaker B: Ooh, Apple. I'm an Apple user.

Speaker A: And finally, would you rather be the world's greatest artist or the world's greatest musician?

Speaker B: The world's greatest musician. I do love to dance, so I think having that experience will be incredible. That would have been amazing.

Speaker A: Thank you very much. What wonderful answers and justifications. I love that. What about you, Sam? Would you rather be the world's greatest artist or the world's greatest musician?

Speaker D: Oh, um, artists.

Speaker A: Oh. Okay. Georgie, for balance, I've got to ask you as well.

Speaker C: Well, seeing as I'm a karaoke queen. Oh, I'm going to have to say musician every single time. My dreams of singing in the shower, being a superstar on stage when I was growing up, um, are still there. So when I go on karaoke, I love to do a good old sing song and showcase my non singing talents.

Speaker A: Yeah. I must say I probably would gravitate towards being the world's greatest musician as well.

Speaker D: But I'm an outlier. You see. I'm thinking about the long game here.

Speaker A: I love that, Sam.

Speaker D: M. It lives longer than you do.

Speaker A: Oh, that. Well, that's another debate, isn't it? M. Goodness me. M. We could, we could change this podcast to that. Let's talk about what we're going to talk about, which is our second part, of course, conference season. I guess we call it conference season because quite a lot of conferences happen towards the end of year, but they are dotted throughout the year. So it's not just one part of the year that has conferences, but it's usually this part of the year where we really get uh, our, our uh, glad rags on and go. Go to conference town. And that's what we've been doing and we'd love to talk a bit about it. We're lucky to have Sam and Era join us because they've just come back from ispor which was the latest conference we've attended and we're going to be talking a bit about their experiences there, but also a little bit beforehand getting to ISPRO and creating something that was so keenly received they wanted us to present it. So let's dive into that subject and find out a little bit more about it. So starting with you, iro, how did we get the idea to present at ispor? What was the catalyst?

Speaker B: There were a lot of internal discussions about ideas that we could put forward and we explored different options. We had conversations with Sam here and other people from the team and essentially we wanted to focus on one of the key topics of ESPER uh this year, which is patient engagement and patient input in decision making. The aim was to really explore how patient input is taken into account in HTA decisions. And we wanted to capture variations between HTA bodies just to really understand how patient input is taken into account and what can we do to increase the input, uh, that patients give.

Speaker A: And so how do we get it from that into an actual thing that we could send to us and say, this is our submission, this is what we want to discuss.

Speaker B: So we firstly narrowed down the markets that we wanted to focus on. We decided to look into the uk, Canada and Australia, with all of which consider patient input and have an um, economic analysis element of their decision making, which is key for us as a metric to understand the extent of impact that patient engagement has and patient inputs. Uh, we then spoke with our Wiz M at P4ASEB, uh, who is our data analyst and really tried to understand how he could help us with pulling all the information that uh, we could focus on. And we also narrowed our scope to cell and gene therapy. So cell and gene therapies are key therapeutics in the rare disease space, as you all probably know. Uh, so that was another key focus for us to really take the rare disease perspective in.

Speaker C: So when we were doing our submissions, initially I believe it was for posters, um, iro, so correct me if I'm wrong, we put together four posters admissions this year, all different teams from partners for access. And the reason that we've picked on Sam and Eero to join us at the podcast today is because we had some really exciting developments upon that abstract that we put in. First of all for the poster. So let's talk a little bit about your abstract, um, the submission that you put in, uh, and then the outcomes that we got from that in terms

Speaker B: of the abstract development. We collaborated with uh, Sam, Seb and some other members of the team. To identify different cell and gene therapy appraisals across the three HTA bodies that we picked. And we landed on a few cell and gene therapies. Uh, so Gensma, Yes. Carta, Tecartis and Hemgenics. And we firstly assessed the number of mentions of patient inputs in these HTA reports. We tracked the variation in word counts just to see if there were any noticeable differences. And then we used a uh, large language learning model and some context analysis to understand how patient input was considered in HTA decisions. We analyze their findings and then we draw some conclusions on how much impact patient reported outcomes had in HTA decisions. But also other forms of patient inputs uh, that are less frequently seen. There is a trend in their inclusion in the last few years, but uh, not as much impact as we would like yet.

Speaker A: Um, and as Georgie mentioned, it was initially put into a sort of poster format.

Speaker B: Yes. But after we submitted the abstract there was a development as you said. So it was selected as one of the top 5% finalists of the submitted abstracts. And we were also chosen to present this as a podium presentation at ispor, uh, which Sam can uh, tell you about, uh, from who's the one who presented it. So that meant we had to redirect our efforts from uh, a poster to developing a presentation for the people it is for.

Speaker A: And what an amazing accolade to be have a top five award for misspool, which is a huge conference. I mean that must have felt amazing.

Speaker B: Yeah, absolutely. We were thrilled. And it's really exciting to see this sort of uh, recognition when it comes to a focus on in rare diseases as well. Because the conference is not just rare diseases, it's across the board. So seeing that come through as an important topic was particularly uh, exciting for us.

Speaker A: Amazing. And that's really Sam, um, where I guess you started to get really involved when they wanted us to present at ISPOR and we asked you.

Speaker D: Yes, well I've been going to ispool for a number of years and I am going to say, say it's wonderful to see for the first time ever they had the patient back, which I think helped that we were talking about patient uh, input into HTA processes. Um, I will also say that it's really key to understand the impact of patients, um, input on the HTA decision making and hopefully this can encourage companies to engage more with the patient experience data in all of its forms because they can see that it really does make a difference to those decision making processes. We spent a long time thinking about what we should do for patients rather than asking patients what they would like us to do.

Speaker A: That's a really good point. You know, um, every little bit helps, doesn't it? Even what we're doing at a, uh, conference can have a little, you know, make a difference and make people just recognize the patient involvement is really important. And it's becoming more and more important as the years go on. So great that we've got this. And I think that there's some really important findings from the work as well. We've submitted, we've got our, uh, top five award. They all have to do a presentation. So I guess we're off to Glasgow.

Speaker D: We were off to Glasgow and, um, we had a presentation with, um, four other sessions that were also patient focused, which I think was really nice. We talked about patient input into clinical trials. Um, the first part of the session we had, then how to develop pros, and, um, then some, uh, patient preference work that had been conducted in South America. So some really nice, interesting areas before. We talked about the impact that that patient work has on the HTA outcomes. So really nice flow of patient influence throughout the development process. I think there. And, um, from a personal perspective, it felt like a silent disco. Now, I said I didn't want to be a musician, but we. We were in the, uh, theater, one that had the headphones, and we all had our headphones on to listen to each other present. So I controlled myself. I didn't dance, Georgie, you'll be pleased to know. But it did.

Speaker B: I'm sure everybody love that.

Speaker A: Sam, I can see you busting a moonwalk right now, Sam. So. So one thing I wanted to ask actually is we've been talking about ispor, and when I started working in pharma, I was unaware of the crazy amount of acronyms that are thrown around or abbreviations. One of the two things. And we've been talking about ispor, but I want to ask first, does anyone actually know what ISPOR stands for?

Speaker C: I'm sure Sam does.

Speaker D: International Society of Outcomes Research.

Speaker A: That's the one. So really like. Like you said earlier, it is actually a. It's not. Not a rare disease conference. It's a conference that is open to all. Really.

Speaker D: Yes. And it's huge. It gets larger every year. So we were at Glasgow eight years ago.

Speaker A: Yeah.

Speaker D: And it is. It was much larger than I remember. Glasgow 8 years ago.

Speaker A: Iro, had you ever been to Glasgow before?

Speaker B: I had when I was very, very young. But I did not remember ESPOOR M. I visited before. And it's honestly a, uh, Beautiful, beautiful place. Uh, it was also uh, just in time for uh, the Christmas decorations so they started putting those up. So that made the city a lot more magical at night. Uh, and yeah, uh, was really nice.

Speaker A: And Sam, you know, I mean you're not Glaswegian, but you know Glasgow.

Speaker D: Well no, my ah, family's from Hamilton so just down the road. So yeah, uh, many times.

Speaker A: So tell us a bit more about istpaw in general. Um, what did you think of the vibe there? How, how did you, how did you find people? What did you see?

Speaker B: It was a very, very large uh, conference. So as Sam mentioned, loads of people. There were a lot of engaging presentations from different specialists in their fields. And um, that was a key, uh, key element of it for me because I got to learn a lot of new things that helped me not just on my day to day job, but also in uh, understanding the field that we're working in. There were a lot of uh, company booths and different poster presentations. So quite dynamic. A lot of things going on at the same time. Uh, and always something interesting uh, for

Speaker D: you to, to pick going for many years. I think it's always nice that you get academic presentations so you get posters from universities, from students, um, you get publications from the more payer community um, out there as well and presentations from them and you get them from industry. So it really does bring together everybody. This year there are always patient organizations represented there, but I think this year with the patient track it made that even more prominent. So it feels like all of the stakeholders are in the room, including things like the World Health Organization and policymakers.

Speaker C: I'm not sure if our listeners Follow us on LinkedIn, but whilst you were there every day you kind of gave us a uh, lovely summary, a write up, key takeaways. What were the sessions that really stood out for you? Uh, so I'm going to ask you both, what was your favorite session? What really stood out for you?

Speaker D: Um, I think for me it was the inclusion of that uh, patient element. And um, interestingly I think the plenary on day one had an uh, investment banker there. He was from that world rather than the healthcare world. Although there's a lot of investment in obviously healthcare, which was why he was present. Uh, and his view that we should talk to patients more, we should engage with them so that we know what we're delivering is meeting their needs. And it makes sense from that economic view I think was really encouraging to hear. So that would have been my key takeaway.

Speaker B: I think there are lots of things that stood out. But one that stuck with me was about the jca. So the joint clinical assessment that's coming up, um, that's already started. And there was a session with panelists from industry, those responsible for carrying out the joint clinical assessments, and seeing that interaction between them and really the uncertainty that comes with it, but also the benefits that will come from the JCA was a very interesting thing to be a part of. And also how patient reported outcomes will take a part in this new procedure that we're all familiarizing ourselves with. So, yeah, that would be my, my top pick.

Speaker A: I've got another takeaway that I'd like to ask you about. Um, but this one happened at a fish and chip shop.

Speaker C: Oh.

Speaker A: Can you enlighten us on what happened?

Speaker B: Well, Sam left me and Marco unattended for a few hours. Um, Marco, he also joined us, uh, at Esport. And we had to, we simply had to try the deep fried Mars bar, which we've heard a lot about before going up to Glasgow and honestly, yeah, it was the most delicious thing I've had. It was so good. So good. Perfect when you're in the cold. Um, we were walking. Marco. Yeah, yeah. Uh, we just took a bite and stopped walking and looked at each other and we're like, oh, my God, this is really, really good.

Speaker A: You know. You know, if when food stops you in the street, you know, it's going. I remember we went. I went to New York with my wife and I had a hot chocolate from this place. Best hot chocolate in the world.

Speaker D: Yeah.

Speaker A: We had to queue up for an hour and I was. They were really rude. Anyway, we got outside and I was so annoyed and I had a sip of this hot chocolate. I was like, it was worth it. It was worth it. Yeah. So amazing. I love the deep fried Mars bar story. That's fantastic. Well, it sounds like you had a really great conference, you know, with Anton Reckon curricular activities, and your presentation went down brilliantly. So, you know, that is great news. And if you're interested in this presentation, I've, uh, got great news for you because if you head to www.partnersforaccess.com, you can check out our conference section and on M there you'll be able to find out all the conferences we've attended this year and previous years. But also, um, not just that, but the information and the presentations delivered at those conferences and also the poster. So please go and check that out. The information there is absolutely fantastic. Brilliant research and concepts. So I'd highly recommend you to look at that. Georgie, is there anything else we want to take away from this podcast? You're always brilliant at these finishing bits.

Speaker C: Just listen to the themes that have come out from it. Um, in all the years that me and Owen have been doing the podcast and hosting them, patient engagement, patient voice has been a really, really kind of big trend. And I don't think that's gone away. It keeps coming back year on year. It's involving the patient, listening to the patient, understanding the patient, the patient journey. There's lots of different connotations and lots of different ways to say it, but I think that that really is a key theme. Um, and there's lots of stuff that we do at Partners for Access, lots of services we have, including our new social listening pulse, uh, that really dive into what patients are really thinking, what they don't tell their gps, you know, what they're not saying that they can say openly in forums that we're able to pick up and turn that into real valuable insight. So I think that really is incredible. And also, obviously, the jca, as you know, we had our JCA summit last year, our Access Summit out in Zug, which we will be repeating again this year, guys, um, to stay tuned for more details on that. But again, I think that that's really, really important for our clients and customers to really get on top of that early, really make, uh, sure that all stakeholders are collaborating early and they really need to think about their ways of working and how they can incorporate that early. So I think they're my two real biggest takeaways other than getting a podium presentation. Guys. I mean, come on, top five. That's just incredible. Um, and it's quite unheard of. It's quite difficult to get that. So, you know, for our audience members listening, it's. It's a really big thing that, that we've managed to do. Not that we're bragging. Well, we are a little bit. But, uh, it's. It's really incredible. And hats off to everybody that's involved. And I think. Yeah, that's my. That's my real key takeaways from it.

Speaker A: Told you. Brilliant at it. Well, thank you so much for joining us. Eero, Sam, you've been a pleasure as always to have on the show. Thank you so much. Be away too long. We'd love to have you back. Georgie, thank you again for your time. And what I would like to finish with saying is next episode is going to be an absolute classic. Um, we are celebrating 10 years of Partners for Access. 10 years ago in a small little Dutch town, a brilliant person had a brilliant idea. Partners for Access was born. Stay tuned to learn more about that. Thank you for listening to the discussion. You can find more information about this subject and other matters relating to rare disease and cell and gene therapies on the Insights section of our website, www.partnersforaccess.com.