Patient-Centered Solutions: Navigating challenges & unlocking value through patient engagement
MAPS speaks with Liz de Somer, CEO of Medicines Australia and Sharon Winton, CEO of Lymphoma Australia to explore patient engagement from the perspectives of industry and patient associations. Liz and Sharon are also speaking about this topic at the MAPA/MAPS Medical Affairs Summit in Sydney, AU, Nov 8-10, 2023.
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Welcome to this episode of the Medical Affairs professional society podcast series elevate. I’m your host Garth Sundem, communications director at maps. And today we’re speaking with Liz de Somer, CEO of Medicines Australia, and Sharon Winton, CEO of Lymphoma Australia. The group is presenting a plenary at the upcoming MAPA/MAPS Medical Affairs Summit taking place November 8 through 10 in Sydney, but because not all of us are lucky enough to be able to be in Sydney, we thought we would bring some of the conference content to our wider audience here. So Liz and Sharon, welcome. And I was hoping we could start broadly. Sharon, can you tell us what we mean these days? By the term? Patient centricity?
Right question, because I think depending on who you speak to, you’re probably going to get a different definition of what we call patient centricity. And we’ve all seen the circle with the patient in the middle, and everything else going around them. But the question is, is that really what we call, you know, is that what we think it is? Is that the limitations that we’ve got now that we actually need to expand upon? You know, and just to follow up on that, so I’ve seen the I’ve seen the circle with the patient at the middle, it seems like that might be an aspirational definition of patient patient centricity. Let me just ask, Are we there? Are we actually moving toward that? Or or is that still purely an infographic?
I think it’s an infographic that we can actually use to aspire to. But I also think that it’s actually a very complex question as well. So with the patient in the middle, if you look at it, the patient is also then surrounded by many decisions within their healthcare. So whether or not you know, they’ve got doctors, they’ve got nurses, they’ve got treatment plans, they’ve got finances, all of that. So that needs to be taken into consideration by the by the patient. But also the next layer is around the actual systems that we have to work within as well. So our HTA system, our pharmaceutical industry, our hospitals, and everything like that. So to really get a truly patient centric situation, it is going to take an enormous amount of collaboration. Okay, well,
why do you why do we need that patient in the center of the circle? I mean, it used to be that pharma, and medtech. And industry in general knew the treatments we were targeting and we would develop against those disease states. Why now? Do we need the patient in the center of that circle?
I think that there’s been gotten a massive learning curve for the community during COVID, where everybody became an expert in Epidemiology and Disease Transmission, I think we have more communication than ever before. And patients are aware of what’s happening far more acutely than they ever used to be. And not just patients, carers and the community and clinicians. And there is a real need for equity of access to the best technologies that are emerging. There has been a rapid evolution of science massive advances in the way we treat diseases, significant changes in treatment outcomes. We are even using quite truthfully the word cure for some diseases, and patients are aware of what they are, should have access to, what they are missing out on, and what the opportunities are for them to have access. So I think it all stems back to access and ensuring that people who have a disease and can see that there is a new treatment or a cutting edge treatment or a better treatment available, want and should have access to it. Now, that’s interesting that the pandemic really drove patients engagement in their own health care. You know, it’s almost like what is it a punctuated evolution thing? It seems like we were going that way. And maybe the pandemic really accelerated patient’s involvement in the information ecosystem have their own care. And and so now, if they know something is out there, and it’s better and they want it
Sharon, are you also seeing access being one of the hinge points or one of the hurdles of patient centricity. Now,
definitely, and I think this goes totally to the core of the session as well. And I 100% agree with what Liz was just saying to,
we go back a decade, and a patient would only really be getting the information from the doctor in front of them, or anyone else who may be sitting in the waiting room. But technology has moved us all forward. So there are no boundaries to the information that patients receive, both globally and within their own countries, which then actually puts everybody in this real conundrum of equity of access as well. So it’s like, once we know the information, or us as a patient organization, it’s about, we can’t turn our back on that. Why aren’t our patients receiving the care that they should be based on the best possible medications and technologies that are available to them. And I think this is where, again, it’s like, let’s not treat patients, including ourselves as being tokenistic in this whole journey. Because even as an organization, the value of information that we learn from talking to patients, is so critical in shaping how we can move forward with all of these advancements, as well. And so we really need to be working together. So it’s great that we’re starting to have these much broader conversations. Well, so since we have Liz, who represents an industry, mostly organization, and we have Sharon, who comes from the patient Association side of things, I wonder what you would say to each other, about how to work together to elevate the patient voice, you know, everyone I talked to in industry, they want this, they want to represent the patient voice in everything from clinical trial endpoints, you know, to to, you know, trial recruitment.
How how can industry work with patient advocacy organizations to ensure patient centricity? Maybe Liz first year or whoever wants to jump in? Yeah, go ahead, Liz. It’s a really good question. Because I think that, particularly in Australia, we’ve thought very long and hard about how to engage appropriately with patients and patient organizations. In Australia, we are prohibited from promoting therapeutic products directly to patients. That does not mean we cannot talk to patients and patient organizations about the clinical trials, or the submissions that are going through the TGA or the submissions that are going through reimbursement, we just have to make sure that we are providing accurate, timely and appropriate information to improve their knowledge and education. The really interesting thing for industry is to understand what matters to patients, what do they really value. Clinical trials, as you know, will have primary care outputs primary endpoints, they will be based on knowledge of the pathophysiology, or history of a disease. Sometimes they are direct outcomes, sometimes they are surrogate outcomes, they’re usually against some kind of comparator. And sometimes they don’t adequately capture the things that matter to patients. So I think from our perspective, the bit that’s been missing, and the bit that we need to do better is measuring, understanding and valuing what that what value these new products mean to patients in a holistic understanding of that value. So Sharon, how can we help your patients?
What would you like to see from industry that we can do to help your lymphoma patients? Well, I think I can speak from a lymphoma perspective, but I think more generally, just from you know, a patient’s perspective and you know, an Australian community perspective as well. And so I do go there is the individual person that needs to be considered in this because then that gives them access, but we want access to equitable information, the same treatments, and is that what is actually holding some of us up at the moment, as well as not having that information that is shared equally across a nation. But on top of that, I think, you know, we’ve also got the issue where globally patients are connected. And that is actually then creating additional issues where patients are needing access to treatments that are currently not available in their countries.
To the pharmaceutical interest industry is actually the key for patient organizations to understand all about these new treatments that may be horizon scanning to us, but are really already approved in other countries. And we want to be able to bring that access to Australians as quickly as we possibly can. So whether that’s through clinical trials, or whatever, we need to be doing that. And then the second, the second big layer is definitely the HTA system, and how do we value the patient within the HTA system. And that’s where there’s a lot of work that needs to be done so that it’s not seen as tokenistic. And that it is weighted accordingly. But also that patients feel they’re valued in that as well. And we can see some clear outcomes that matter to patients. And that’s where I’ve seen a lot of great work happening over the last five to 10 years. But we still haven’t truly embedded the patient and what they see as valuable within that system yet. And I apologize for an uninformed question. But are HTA is starting to look beyond safety and efficacy in their calculation of value. And is that what we’re talking about here is helping HCA is look more holistically at what value means. From a patient centric perspective.
Yes, we can look at it from a value perspective as well. But I think we’ve also got to be with patient organizations, we have to be credible, and
form partners within this too. So there is still around safety,
cost and outcomes that need to be considered by all parties. So it’s not about we value this and therefore you should just give it to us. So there is an onus on patients as well, and patient organizations mainly to be able to understand that you can’t actually change how we’re going unless you actually know what you’re talking about. But then it also then without that information from like pharmaceutical companies and everything, we’re actually they’re not credible players at the table, because it’s like, well, yeah, we just want this well, why do you want it? I don’t really know, because no one’s actually explained it to me, but it sounds like it’s a really good thing for this patient, sort of thing. So. So is it is the flowchart here, Sharon that your organization would hear from patients? And they would say, hey, we want this. And then Liz, is it that industry organizations would then hear that and conduct the evidence generation activities needed to what quantify that or formalize it? I’m just thinking, what is the what is the industry inroads now to access? Seems like working through the HTA is, but But what would you recommend that industry do to? To address this question of, of patient centric access?
I think we need to go right back to the clinical development programs that industry is setting up now for the future, we do see, we do see that there is more engagement with patients and patient advisory groups in the setting up of clinical trials in making sure that they are considering patient expectations or patients viewpoints in setting up clinical trials. But we also need to perhaps be better at developing the right tools and measures to quantify those benefits. There are some quality of life measures. I think they are not as good as they could be. And I think that there is it is incumbent upon us as an industry to think about how do we improve our tools that actually measure what matters to patients, and then validate those so that they actually contribute to the decision making. So that we’ve got patients right at the very beginning in the clinical development. And then when you have your clinical program and you’re going into HTA for for value of assessment for reimbursement, are those measures adequately demonstrating the value that patients are getting deriving from that treatment? We know that they can be taken into account and we hear examples where for in Australia that PVAC has taken them into account, but it’s at the end of the process, and it’s late and it’s an afterthought and it’s not quantifiable. So we really see that this work needs to be done earlier where patients are contributing to the clinical development, but there also needs to be some innovation and academia working on what are the measures what are the tools What are
The what are the validated ways we can actually quantify that benefit? In a way that means something to patients, but helps decision makers and how to patients help us do that. Okay, so maybe it’s the
the role of a patient association to let us know what matters most. And then the role of pharma to figure out how to measure what matters most. Okay, let’s, let’s leave it there for today. So thanks, Liz and Sharon for joining us. If listeners happen to be in Australia, November 8 through 10th, we would very much love to say hello at the mappa maps summit in Sydney. And we hope you enjoyed this episode of the Medical Affairs professional society podcast series. Elevate