Welcome to Pharma Talk Radio. I'm Danny McCarthy. Today's podcast focuses on the current state of patient centricity within the biopharmaceutical industry. In this conversation, doctor Matthew Reeney, scientific lead of Patient Centered Endpoints at IQVIA, and doctor Anthony Yanni, SVP and head of Patient Centricity at Estellus discussed standing up patient centricity functions within large organizations, proving the business case for doing so, and the value of getting patient
perspectives in the medicine development process. I'm going to hand things over to Matt to be in.
Thanks Stanley in It's a real pleasure to be here with Anthony. Anthony and I go back a few years
from when we worked together at Sonofi. There was a team at SONOPI that we were part of that was really there to understand the patient experience from early drug development, understanding people's experiences of the disease and the treatments that they're experiencing as part of routine care, all the way through to how we can collect that information from patients as part of clinical trials and use that to inform decision making and into routine clinical care. And then we
went in slightly different directions. You went over to Aestellus and the head of patient centricity there, and that's something I'm really interested to learn a little bit more about. You've got a bit of a unique team there, and I headed out to IQVI and the head of Science
and Analytics and the patient centered Solutions team. But our parts of week back together actually relatively recently, because they published a book called A Bandana and a Bluebird, which was all about patient centered healthcare systems, and then you kindly agreed to contribute to a book that we were putting together on the QVA side, asking about patient centricity within the biopharmaceutical industry and where we are and how
we're doing. And it was really interesting getting your perspective on how things are, given that you've not only focused on the patient centered healthcare system but also tried to integrate those concepts and those principles within the drug development arena. And so I wonder whether you could talk to us a little bit about your team ASTEATUS. I'm really intrigued to learn a bit more.
Yeah, thanks, Matt, it's great to be here with you. You've summarized it quite well.
Our paths have converged many times, and it's been great that you know, over the last year or two we've connected intermittently but very meaningful ways.
I think to really.
Try to advance this idea of patient centricity.
My transition over the years I've been in.
This space for about fifteen years, it was about how do we convince people that patient centricity was an important part of the future, because back then when I first started in this space, nobody was talking about engaging patients. It was truly those words were never put together patient engagement, you know, fifteen seventeen years ago, and the first time I remember raising it in the research space, there was a revolt in the room.
Saying, you're crazy if.
You think we're going to add another variable to the very complex work that we do. And slowly, over time they realized that there was a value to understanding what it is they're trying to achieve in the exam room with their primary customers, which is which are the patients. And so when I transitioned to Stellus in twenty nineteen, it was a great opportunity to create version two point zero. Learning from the past lessons in the first iteration and
understanding the impact more so than the language. You know, we get lost in language in pharma. We talk about similar words with different meanings, you know, engaging the patient in the in the past, the commercial world used it and had a completely different meaning than what researchers would consider meaningful engagement and what patient centricity would consider the
goal of engagement. So when I came to Estellus, I was able to create what I consider to be a very meaningful, actionable set of teams that work with the traditional research and development process and delivery process to include analyzes that have patient insights, physician insights, caregiver insights as part of them, so that we can make better decisions at all decision points in research development and delivery that include an understanding of the.
Customer the patient.
So right now we have a highly specialized team that helps bring the exam room into the research lab. So researchers now understand, Okay, I understand what the science is, but patients don't buy science.
They buy medicine.
How do we link that science to the need and value that's out there in the right patient population.
That's what this first team does.
We have a team that looks at the patient in the real world setting, truly understanding the.
Patient where they live.
We know clinical trials are not similar to the environments the patients live in, and we need to understand the patient, their environment, their ability to access care, their ability to access careers, and we need to understand the symptoms that exist in their life even beyond the disease fatigue, insomnia, anxiety, depression. If we're going to deliver care in not treatment, we need to understand the patient where they live. We have
a team that partners with patients globally. We've moved away from transactional relationships and tried to create bidirectionally beneficial relationships where patients can provide us with their expertise and their journey and their path within their geography and their culture, and we try to provide access in knowledge education so that we can help them grow in their understanding of
opportunities to be part of the care system. Lastly, we have a behavioral team that looks at all the behaviors because we know now behavior is a huge part of care right we whether it's some studies say fifty percent, some say seventy percent, at the end of the day, it's a large component of how people are effectively cared for.
So understanding the behaviors in the real world that challenge good care and access, in understanding the behaviors that promote it are critical if we are going to deliver solutions. So those are the operational teams, and then we have a cultural team we could talk about separately that I believe is foundational in a patient centricity function, you need to create a culture of active patient centeredness and it's got to be more than a sign on a wall.
And that's what sustains the operational piece.
Everything you said, and it's not new right. You mentioned patient experiences, you mentioned patient priorities, preferences, needs, doing things that in drug development align with what's important to people. Understanding how people will engage in healthcare systems, engage with treatments, longitudinels, sustained engagement, to ensure that there is not only a culture of patient centricity, but also that there is a model that allows for everyone to learn and develop together.
So no new words, I guess, but the way you've put it together perhaps is a little bit unique. How How did you do it? Who did you have to convince and how did you convince them?
So you're right, I think this is sort of an intuitive concept. So if you look at other industries, there's not an industry in the world that doesn't engage the consumer before they mass produce the first product. Of course, they engage the customer and they look at ways to refine the product before it's produced. Yeah, farmer wasn't doing that fifteen years ago. These are words that we use now regularly, but fifteen years ago, when we were talking about this, it was not part of the dialogue.
And so the first thing we.
Had to do was convince people that better decisions can be made with this information. And the other difference between language, as you pointed out, that is being used over and over again and today, is that the language is associated with action. I think we talk about these things a lot, and we talk about engaging the patient and getting their inputs. But which is all great, it's all a necessary component of the future of what I consider to be the
disruption in pharmaceutical and solution development. However, if you don't link it to action, we are not even close to completing the process. And so the difference in what exists today is that there's action associated with it is completely linked to somebody or some team creating an analysis for the traditional teams to react to and make better decisions. And so the convincing part was fifteen years ago when we brought it.
To a research team.
Their initial reaction was no way, absolutely not. Are we going to complicate an already complicated process with additional information from the customer who doesn't understand the science.
And so we had to convince them through the.
Example, you know that it doesn't prove their decision making, that the goals are completely aligned.
So what it took was a lot of persuading.
I knocked on a lot of doors of research teams, literally begging somebody to let me do an analysis for them so that they could just react to it. And finally a team did and they immediately saw the value in it that we were not trying to make their decisions, we were trying to make better decisions with them.
And from there it just it literally took off.
So my recommendation, as example, you have to have a valuable product, and if you have a valuable product, be persistent, create examples, and then let the customer be your evangelists. And that's what That's pretty much what we did across the research space. The development space and the delivery space. We continued to create examples that were valuable, improved decision making, improved deficiencies, and ultimately they became the best advertisement for the product.
So tell me a bit more about those values. And you mentioned decision making, you mentioned deficiencies, but there was clearly something in there that the team saw and got excited about, something that they saw in return that provided some either streamlined approach or some direct feedback that allowed them to improve their program. What was it that you feel with those early indicators of value.
I want to be clear for folks listening that are trying to build these things, I don't want to summarize it in a way that makes you feel as though it was easy and you're having a difficult time. And what I'm talking about in simple terms, are very complex processes.
But what we did was.
Basically look at the decision making processes.
For instance, we use research.
It's a very scientifically driven process. Does the molecule hit the receptor, how long does it stay, does it seem relevant in a particular disease area, And that's sort of how research progressed, right, and then it became a biostatistical argument when you get into clinical development, right, so you can see how this could proceed without the patient scientific validity, safety,
p value right. So what we tried to do, and what we've done is convince them that the reason the research is successful and development is successful but the product isn't is because the patient was never consulted as to whether or not this is going to be impactful in
their disease process. So our analyzes are very complex. They include the traditional pieces of information that research and development and delivery typically rely on, but it also includes very complex pieces of information that asks the question of will this have clinically meaningful benefit? What is the current standard of care, what are the gaps in care, what are the potential entry points, what can this molecule in this early phase, what do we believe it can achieve? What
are the characteristics for success? And creating this very complex but detailed analysis gave researchers one a point of conversation. So we engage them very actively and go back and forth with the why and the what and the how and the rationale. But then we also allow them to reiterate and redesign their thinking, and then we stay with
them and try to work through this. So the goal here is can you prioritize a research portfolio early on so you're not wasting resources and most importantly time, and can we align the molecule and the science with need and value in the right patient population. If you can do that inside of a company, everything that enters clinical
development will have a basis from the customer perspective. Doesn't mean it's all going to succeed, but if it does, there should be customers on the other side waiting for it if you rationally approach this from a need value in science linked perspective. So that's one of the returns that companies can see very clearly. Hey, we've pared down our portfolio not just based on science, but based on
the linkage of science, need and value. And now we know the things that are preceding and that we're investing in if we are successful, are going to have real value to the people waiting.
Yeah. I think it's a really important point. I think all of us are a little bit guilty as people with scientific backgrounds of getting excited about the innovation, and we assume that that excitement will be shared. And sometimes it's not even scientific innovations. Sometimes it's this assumption that we place on the way that people may live their lives and the benefits they may perceive. My own career
has been littered with examples. I worked on transplant programs where we assumed that people would would get very excited about transplants when they were living really tough lives and in need of in this case, puncreous transplants, and the immunosuppression versionment was so tough that people stopped taking it
the transplants failed. I remember doing some work with new anticoagument therapy where there was a reducingly for INR monitoring and getting very excited about reducing the burden of people taking time off work, but the anxiety went up dramatically. Medication well the wonderful thing that is potentially available for people with at that point when I was doing a type two diabetes, Yet we found that people were forgetting they would So there was another reason for non adherents
that we hadn't really accounted for. So understanding and incorporating that patient perspective I think is really important to do, as you say, in those early phases, so that we don't go down the path that is medically innovative, scientifically robust, but actually doesn't give opportunities for meeting those core needs of patients and healthcare professionals.
Yeah, and what you just described, I mean is just perfection as an example, right, the things that seem so intuitive, and let's face it, right, And I say this all the time when I speak externally and when I speak to the teams in the company. Without science, there is no innovation, There is no new medicine. Right, So that the work that you did early on and the work that these scientists do is the foundation of the next
generation of solutions. Right, it's just refining that energy and that intellect meaningful solutions.
That is true.
Patient centered thinking, right, the assumption that we know best. And I spent thirteen years in the exam room, at the bedside, in the hospital setting with patients when I was a practicing physician, and today I still learn every time we talk to patients because their situation is different based on geography, culture, belief system, age. You truly need to understand what is it we're trying to achieve and in who and where, and we need those patients to help us.
There's no question you.
Just bought something in that I think is really important because some approaches to generating an understanding of the patient perspective can rather a skinny approach, let's say, to doing that and haven't appreciated or understood some of the heterogeneity that exists within patient populations. Right you mentioned culture, age, geography.
There are lots of variables that impact on the way that people feel, not only feel and function regarding their disease and perspectives on treatment, but also how they will report what's important to them and how they feel within
the context of a clinical trial. To that end, because when we were collecting these essays for that patient centricity book I mentioned, we had essays from patient advocacy organizations as well as people from within the industry like you, Anthony, and what we heard was a real need to increase
the generalizability of our understanding. And I do think it's important for us to recognize that hearing from a small group of people may not allow us to fully appreciate or understand some of the complexities that exist in living
with disease or considering managing that disease. You've obviously done a lot of work with patient organizations as well as individual patients and you talked about the term on investment or a stellus and pharmo in these engagements, But what about the other side, How are those guys benefiting from the kind of work that you're doing.
So first I want to congratulate you on the book.
The book is just.
A terrific effort on your part in a QVA to create a series of thoughts, if you will, from people doing the work. Just just an amazing effort. So congratulations on that. I was very humbled to be part of it. So I'm going to take a position here that may be a little bit controversial, and that is that on the opposite side, people become paralyzed in industry because of that worry. Am I getting enough input? Am I doing
enough to get a generalized population? And what happens as a result of this paralysis.
Is nothing moves forward.
My argument is do what.
You can do.
Talking to patients in any geography and outside of any culture, in any age group is better than not.
Talking to them.
And connecting it to action is the most critical piece. So when we engage patients, I tell my teams all the time it is not a one and done. Get all the information you can from this population. When we're working with researchers, it is a longitudinal engagement activity that parallels the research, development and delivery process. So we're engaging and analyzing and reporting, and engaging and analyzing and reporting multiple times through the life cycle of a molecule's development.
Do what you can do in reasonable ways to get as much information as possible in multiple formats, by interviewing group patients, by interviewing in different geographies, by interviewing.
Patient in engaging patient.
Groups, by looking at literature, and some diseases they're well, very well defined already where there's been a lot of engagement activity. Use everything you can use, and now with technology, there's ways to expand that understanding. But do what you can do, be relevant, be engaged, be actionable, and that is the beginning of a truly functional patient centricity activity.
Tell me, then, how we can think about this benefit for multiple groups. We've talked about spending a number of years in routine clinical care at the bedside before coming into FARMA, but we talked a little bit about the engagement of advocacy organizations and other groups. The return on engagement for Estellus is something that you've spent a chunk of time thinking about and defining and showing what about
the other group? So what how how do you encourage either patient advocacy organizations or medical charities or other groups of people to engage in research with the industry, and how does that engagement benefit both them and the clinical decision making Contexte.
I made a promise when I started at Estellas in twenty nineteen. I made a commitment that any patient group that works with us out of Styllist, I guarantee you you're not wasting your time. The information that you gave us will be made actionable and will be integrated into the work that we do. Doesn't mean we're going to be successful, but you will not have wasted your time. And that's one of the biggest complaints of the patient groups. I've told my story one hundred times and nothing ever
comes of it. Nobody ever gives back any more information as to how it was used. Well, we stop that, and in fact, in the books I end one of the chapters with a letter to patients that we should be able to write if we fully engage in the right format and the right patient centricity process, saying to them today's different you are going to be able to proudly go to bed and know that your information helped us create a solution.
So where's the alignment, where's their incentive?
Is that if you're truly authentic and you absolutely use the information effectively, that trust becomes as hard as steel, you know, it becomes this sort of Okay, I understand that you can't guarantee me a product or a solution, but I know that my time is well spent with you, and that's the authenticity of what we need to make sure we present in a.
Real way to patients in patient groups.
That is connected, that is truly actionable. That's what they want, right. You can't take every shot on goal doesn't land. But if you're making the best effort possible utilizing the information in real ways, nothing more can be promised. And that's what we promise the patient group. So what is in it for them? It's an authentic, real.
Effort to gather to develop a solution.
It is not we're going to take your information, describe it and never use it. You're wasting your time. Instead, it's you're part of this. We're using your information, and we'll come back to you and let you know how we've used it. That's the difference, and I think it's real, it's important, it's measurable, and it's respectful to the patients we're working with.
That's really encouraging to hear because in all of the engagement situations we have with patients, there are two words that come up frequently and you mentioned them both, and that's authenticity and trust. And trust in particular is something we hear a lot about people wanting to ensure that they're offering their time, their experience, demonstrating a degree of honesty with you that that information is going to be used in a way to the extent possible that can help to drive things forward.
Yeah.
Absolutely, And you know, working in this space with these methods and these kind of conversations, you and I talk about these things very frequently. You're one of the most patient centered thinkers that I know. The work that you're doing is truly meant to be for the benefit of the people who are waiting and helping us develop solutions.
This is real. This is the time.
Today is the day where everyone who's thinking about this should put away the idea that.
Someday and make it today.
This is the time There's never been better opportunity than right now for patient centricity to be the disruptor and the solution in a very chaotic health care environment.
Ill come think of a better way to finish chanty. Thank you for your time today. Thank you for sharing your experience with me. I always learn things from you, also with everyone else, and thank you for what you're doing at Estellus and for patients everywhere. So it's very much appreciated.
Thanks Matt, I appreciate you. I truly do. I love having these conversations. Thanks for your time, and I hope to continue to work with you to make a difference.
Thanks anthing.
Thank you.
This Farmer Talk radio podcast featured doctor Matthew Reeney, scientific lead of Patient centered Endpoints at Aquvia, and doctor Anthony Yanni, SVP and head of Patient Centricity at Estellus on the current state and value of patient centricity within the medicine development process. For more information, you can visit the conferenceforum dot org. Thank you for listening.