Speaker 1: Welcome to Pharma Talk Radio. I'm Danny McCarthy. Today's podcast
Speaker 1: focuses on the current state of patient centricity within the
Speaker 1: biopharmaceutical industry. In this conversation, doctor Matthew Reeney, scientific lead
Speaker 1: of Patient Centered Endpoints at IQVIA, and doctor Anthony Yanni,
Speaker 1: SVP and head of Patient Centricity at Estellus discussed standing
Speaker 1: up patient centricity functions within large organizations, proving the business
Speaker 1: case for doing so, and the value of getting patient
Speaker 1: perspectives in the medicine development process. I'm going to hand
Speaker 1: things over to Matt to be in.
Speaker 2: Thanks Stanley in It's a real pleasure to be here
Speaker 2: with Anthony. Anthony and I go back a few years
Speaker 2: from when we worked together at Sonofi. There was a
Speaker 2: team at SONOPI that we were part of that was
Speaker 2: really there to understand the patient experience from early drug development,
Speaker 2: understanding people's experiences of the disease and the treatments that
Speaker 2: they're experiencing as part of routine care, all the way
Speaker 2: through to how we can collect that information from patients
Speaker 2: as part of clinical trials and use that to inform
Speaker 2: decision making and into routine clinical care. And then we
Speaker 2: went in slightly different directions. You went over to Aestellus
Speaker 2: and the head of patient centricity there, and that's something
Speaker 2: I'm really interested to learn a little bit more about.
Speaker 2: You've got a bit of a unique team there, and
Speaker 2: I headed out to IQVI and the head of Science
Speaker 2: and Analytics and the patient centered Solutions team. But our
Speaker 2: parts of week back together actually relatively recently, because they
Speaker 2: published a book called A Bandana and a Bluebird, which
Speaker 2: was all about patient centered healthcare systems, and then you
Speaker 2: kindly agreed to contribute to a book that we were
Speaker 2: putting together on the QVA side, asking about patient centricity
Speaker 2: within the biopharmaceutical industry and where we are and how
Speaker 2: we're doing. And it was really interesting getting your perspective
Speaker 2: on how things are, given that you've not only focused
Speaker 2: on the patient centered healthcare system but also tried to
Speaker 2: integrate those concepts and those principles within the drug development arena.
Speaker 2: And so I wonder whether you could talk to us
Speaker 2: a little bit about your team ASTEATUS. I'm really intrigued
Speaker 2: to learn a bit more.
Speaker 3: Yeah, thanks, Matt, it's great to be here with you.
Speaker 3: You've summarized it quite well.
Speaker 4: Our paths have converged many times, and it's been great
Speaker 4: that you know, over the last year or two we've
Speaker 4: connected intermittently but very meaningful ways.
Speaker 3: I think to really.
Speaker 4: Try to advance this idea of patient centricity.
Speaker 3: My transition over the years I've been in.
Speaker 4: This space for about fifteen years, it was about how
Speaker 4: do we convince people that patient centricity was an important
Speaker 4: part of the future, because back then when I first
Speaker 4: started in this space, nobody was talking about engaging patients.
Speaker 4: It was truly those words were never put together patient engagement,
Speaker 4: you know, fifteen seventeen years ago, and the first time
Speaker 4: I remember raising it in the research space, there was
Speaker 4: a revolt in the room.
Speaker 3: Saying, you're crazy if.
Speaker 4: You think we're going to add another variable to the
Speaker 4: very complex work that we do. And slowly, over time
Speaker 4: they realized that there was a value to understanding what
Speaker 4: it is they're trying to achieve in the exam room
Speaker 4: with their primary customers, which is which are the patients.
Speaker 4: And so when I transitioned to Stellus in twenty nineteen,
Speaker 4: it was a great opportunity to create version two point zero.
Speaker 4: Learning from the past lessons in the first iteration and
Speaker 4: understanding the impact more so than the language. You know,
Speaker 4: we get lost in language in pharma. We talk about
Speaker 4: similar words with different meanings, you know, engaging the patient
Speaker 4: in the in the past, the commercial world used it
Speaker 4: and had a completely different meaning than what researchers would
Speaker 4: consider meaningful engagement and what patient centricity would consider the
Speaker 4: goal of engagement. So when I came to Estellus, I
Speaker 4: was able to create what I consider to be a
Speaker 4: very meaningful, actionable set of teams that work with the
Speaker 4: traditional research and development process and delivery process to include
Speaker 4: analyzes that have patient insights, physician insights, caregiver insights as
Speaker 4: part of them, so that we can make better decisions
Speaker 4: at all decision points in research development and delivery that
Speaker 4: include an understanding of the.
Speaker 3: Customer the patient.
Speaker 4: So right now we have a highly specialized team that
Speaker 4: helps bring the exam room into the research lab. So
Speaker 4: researchers now understand, Okay, I understand what the science is,
Speaker 4: but patients don't buy science.
Speaker 3: They buy medicine.
Speaker 4: How do we link that science to the need and
Speaker 4: value that's out there in the right patient population.
Speaker 3: That's what this first team does.
Speaker 4: We have a team that looks at the patient in
Speaker 4: the real world setting, truly understanding the.
Speaker 3: Patient where they live.
Speaker 4: We know clinical trials are not similar to the environments
Speaker 4: the patients live in, and we need to understand the patient,
Speaker 4: their environment, their ability to access care, their ability to
Speaker 4: access careers, and we need to understand the symptoms that
Speaker 4: exist in their life even beyond the disease fatigue, insomnia, anxiety, depression.
Speaker 4: If we're going to deliver care in not treatment, we
Speaker 4: need to understand the patient where they live. We have
Speaker 4: a team that partners with patients globally. We've moved away
Speaker 4: from transactional relationships and tried to create bidirectionally beneficial relationships
Speaker 4: where patients can provide us with their expertise and their
Speaker 4: journey and their path within their geography and their culture,
Speaker 4: and we try to provide access in knowledge education so
Speaker 4: that we can help them grow in their understanding of
Speaker 4: opportunities to be part of the care system. Lastly, we
Speaker 4: have a behavioral team that looks at all the behaviors
Speaker 4: because we know now behavior is a huge part of
Speaker 4: care right we whether it's some studies say fifty percent,
Speaker 4: some say seventy percent, at the end of the day,
Speaker 4: it's a large component of how people are effectively cared for.
Speaker 4: So understanding the behaviors in the real world that challenge
Speaker 4: good care and access, in understanding the behaviors that promote
Speaker 4: it are critical if we are going to deliver solutions.
Speaker 4: So those are the operational teams, and then we have
Speaker 4: a cultural team we could talk about separately that I
Speaker 4: believe is foundational in a patient centricity function, you need
Speaker 4: to create a culture of active patient centeredness and it's
Speaker 4: got to be more than a sign on a wall.
Speaker 4: And that's what sustains the operational piece.
Speaker 2: Everything you said, and it's not new right. You mentioned
Speaker 2: patient experiences, you mentioned patient priorities, preferences, needs, doing things
Speaker 2: that in drug development align with what's important to people.
Speaker 2: Understanding how people will engage in healthcare systems, engage with treatments, longitudinels,
Speaker 2: sustained engagement, to ensure that there is not only a
Speaker 2: culture of patient centricity, but also that there is a
Speaker 2: model that allows for everyone to learn and develop together.
Speaker 2: So no new words, I guess, but the way you've
Speaker 2: put it together perhaps is a little bit unique. How
Speaker 2: How did you do it? Who did you have to
Speaker 2: convince and how did you convince them?
Speaker 4: So you're right, I think this is sort of an
Speaker 4: intuitive concept. So if you look at other industries, there's
Speaker 4: not an industry in the world that doesn't engage the
Speaker 4: consumer before they mass produce the first product. Of course,
Speaker 4: they engage the customer and they look at ways to
Speaker 4: refine the product before it's produced. Yeah, farmer wasn't doing
Speaker 4: that fifteen years ago. These are words that we use
Speaker 4: now regularly, but fifteen years ago, when we were talking
Speaker 4: about this, it was not part of the dialogue.
Speaker 3: And so the first thing we.
Speaker 4: Had to do was convince people that better decisions can
Speaker 4: be made with this information. And the other difference between language,
Speaker 4: as you pointed out, that is being used over and
Speaker 4: over again and today, is that the language is associated
Speaker 4: with action. I think we talk about these things a lot,
Speaker 4: and we talk about engaging the patient and getting their inputs.
Speaker 4: But which is all great, it's all a necessary component
Speaker 4: of the future of what I consider to be the
Speaker 4: disruption in pharmaceutical and solution development. However, if you don't
Speaker 4: link it to action, we are not even close to
Speaker 4: completing the process. And so the difference in what exists
Speaker 4: today is that there's action associated with it is completely
Speaker 4: linked to somebody or some team creating an analysis for
Speaker 4: the traditional teams to react to and make better decisions.
Speaker 4: And so the convincing part was fifteen years ago when
Speaker 4: we brought it.
Speaker 3: To a research team.
Speaker 4: Their initial reaction was no way, absolutely not. Are we
Speaker 4: going to complicate an already complicated process with additional information
Speaker 4: from the customer who doesn't understand the science.
Speaker 3: And so we had to convince them through the.
Speaker 4: Example, you know that it doesn't prove their decision making,
Speaker 4: that the goals are completely aligned.
Speaker 3: So what it took was a lot of persuading.
Speaker 4: I knocked on a lot of doors of research teams,
Speaker 4: literally begging somebody to let me do an analysis for
Speaker 4: them so that they could just react to it. And
Speaker 4: finally a team did and they immediately saw the value
Speaker 4: in it that we were not trying to make their decisions,
Speaker 4: we were trying to make better decisions with them.
Speaker 3: And from there it just it literally took off.
Speaker 4: So my recommendation, as example, you have to have a
Speaker 4: valuable product, and if you have a valuable product, be persistent,
Speaker 4: create examples, and then let the customer be your evangelists.
Speaker 4: And that's what That's pretty much what we did across
Speaker 4: the research space. The development space and the delivery space.
Speaker 4: We continued to create examples that were valuable, improved decision making,
Speaker 4: improved deficiencies, and ultimately they became the best advertisement for
Speaker 4: the product.
Speaker 2: So tell me a bit more about those values. And
Speaker 2: you mentioned decision making, you mentioned deficiencies, but there was
Speaker 2: clearly something in there that the team saw and got
Speaker 2: excited about, something that they saw in return that provided
Speaker 2: some either streamlined approach or some direct feedback that allowed
Speaker 2: them to improve their program. What was it that you
Speaker 2: feel with those early indicators of value.
Speaker 4: I want to be clear for folks listening that are
Speaker 4: trying to build these things, I don't want to summarize
Speaker 4: it in a way that makes you feel as though
Speaker 4: it was easy and you're having a difficult time. And
Speaker 4: what I'm talking about in simple terms, are very complex processes.
Speaker 3: But what we did was.
Speaker 4: Basically look at the decision making processes.
Speaker 3: For instance, we use research.
Speaker 4: It's a very scientifically driven process. Does the molecule hit
Speaker 4: the receptor, how long does it stay, does it seem
Speaker 4: relevant in a particular disease area, And that's sort of
Speaker 4: how research progressed, right, and then it became a biostatistical
Speaker 4: argument when you get into clinical development, right, so you
Speaker 4: can see how this could proceed without the patient scientific validity, safety,
Speaker 4: p value right. So what we tried to do, and
Speaker 4: what we've done is convince them that the reason the
Speaker 4: research is successful and development is successful but the product
Speaker 4: isn't is because the patient was never consulted as to
Speaker 4: whether or not this is going to be impactful in
Speaker 4: their disease process. So our analyzes are very complex. They
Speaker 4: include the traditional pieces of information that research and development
Speaker 4: and delivery typically rely on, but it also includes very
Speaker 4: complex pieces of information that asks the question of will
Speaker 4: this have clinically meaningful benefit? What is the current standard
Speaker 4: of care, what are the gaps in care, what are
Speaker 4: the potential entry points, what can this molecule in this
Speaker 4: early phase, what do we believe it can achieve? What
Speaker 4: are the characteristics for success? And creating this very complex
Speaker 4: but detailed analysis gave researchers one a point of conversation.
Speaker 4: So we engage them very actively and go back and
Speaker 4: forth with the why and the what and the how
Speaker 4: and the rationale. But then we also allow them to
Speaker 4: reiterate and redesign their thinking, and then we stay with
Speaker 4: them and try to work through this. So the goal
Speaker 4: here is can you prioritize a research portfolio early on
Speaker 4: so you're not wasting resources and most importantly time, and
Speaker 4: can we align the molecule and the science with need
Speaker 4: and value in the right patient population. If you can
Speaker 4: do that inside of a company, everything that enters clinical
Speaker 4: development will have a basis from the customer perspective. Doesn't
Speaker 4: mean it's all going to succeed, but if it does,
Speaker 4: there should be customers on the other side waiting for
Speaker 4: it if you rationally approach this from a need value
Speaker 4: in science linked perspective. So that's one of the returns
Speaker 4: that companies can see very clearly. Hey, we've pared down
Speaker 4: our portfolio not just based on science, but based on
Speaker 4: the linkage of science, need and value. And now we
Speaker 4: know the things that are preceding and that we're investing
Speaker 4: in if we are successful, are going to have real
Speaker 4: value to the people waiting.
Speaker 2: Yeah. I think it's a really important point. I think
Speaker 2: all of us are a little bit guilty as people
Speaker 2: with scientific backgrounds of getting excited about the innovation, and
Speaker 2: we assume that that excitement will be shared. And sometimes
Speaker 2: it's not even scientific innovations. Sometimes it's this assumption that
Speaker 2: we place on the way that people may live their
Speaker 2: lives and the benefits they may perceive. My own career
Speaker 2: has been littered with examples. I worked on transplant programs
Speaker 2: where we assumed that people would would get very excited
Speaker 2: about transplants when they were living really tough lives and
Speaker 2: in need of in this case, puncreous transplants, and the
Speaker 2: immunosuppression versionment was so tough that people stopped taking it
Speaker 2: the transplants failed. I remember doing some work with new
Speaker 2: anticoagument therapy where there was a reducingly for INR monitoring
Speaker 2: and getting very excited about reducing the burden of people
Speaker 2: taking time off work, but the anxiety went up dramatically.
Speaker 2: Medication well the wonderful thing that is potentially available for
Speaker 2: people with at that point when I was doing a
Speaker 2: type two diabetes, Yet we found that people were forgetting
Speaker 2: they would So there was another reason for non adherents
Speaker 2: that we hadn't really accounted for. So understanding and incorporating
Speaker 2: that patient perspective I think is really important to do, as
Speaker 2: you say, in those early phases, so that we don't
Speaker 2: go down the path that is medically innovative, scientifically robust,
Speaker 2: but actually doesn't give opportunities for meeting those core needs
Speaker 2: of patients and healthcare professionals.
Speaker 4: Yeah, and what you just described, I mean is just
Speaker 4: perfection as an example, right, the things that seem so intuitive,
Speaker 4: and let's face it, right, And I say this all
Speaker 4: the time when I speak externally and when I speak
Speaker 4: to the teams in the company. Without science, there is
Speaker 4: no innovation, There is no new medicine. Right, So that
Speaker 4: the work that you did early on and the work
Speaker 4: that these scientists do is the foundation of the next
Speaker 4: generation of solutions. Right, it's just refining that energy and
Speaker 4: that intellect meaningful solutions.
Speaker 3: That is true.
Speaker 4: Patient centered thinking, right, the assumption that we know best.
Speaker 4: And I spent thirteen years in the exam room, at
Speaker 4: the bedside, in the hospital setting with patients when I
Speaker 4: was a practicing physician, and today I still learn every
Speaker 4: time we talk to patients because their situation is different
Speaker 4: based on geography, culture, belief system, age. You truly need
Speaker 4: to understand what is it we're trying to achieve and
Speaker 4: in who and where, and we need those patients to
Speaker 4: help us.
Speaker 3: There's no question you.
Speaker 2: Just bought something in that I think is really important
Speaker 2: because some approaches to generating an understanding of the patient
Speaker 2: perspective can rather a skinny approach, let's say, to doing
Speaker 2: that and haven't appreciated or understood some of the heterogeneity
Speaker 2: that exists within patient populations. Right you mentioned culture, age, geography.
Speaker 2: There are lots of variables that impact on the way
Speaker 2: that people feel, not only feel and function regarding their
Speaker 2: disease and perspectives on treatment, but also how they will
Speaker 2: report what's important to them and how they feel within
Speaker 2: the context of a clinical trial. To that end, because
Speaker 2: when we were collecting these essays for that patient centricity
Speaker 2: book I mentioned, we had essays from patient advocacy organizations
Speaker 2: as well as people from within the industry like you, Anthony,
Speaker 2: and what we heard was a real need to increase
Speaker 2: the generalizability of our understanding. And I do think it's
Speaker 2: important for us to recognize that hearing from a small
Speaker 2: group of people may not allow us to fully appreciate
Speaker 2: or understand some of the complexities that exist in living
Speaker 2: with disease or considering managing that disease. You've obviously done
Speaker 2: a lot of work with patient organizations as well as
Speaker 2: individual patients and you talked about the term on investment
Speaker 2: or a stellus and pharmo in these engagements, But what
Speaker 2: about the other side, How are those guys benefiting from
Speaker 2: the kind of work that you're doing.
Speaker 4: So first I want to congratulate you on the book.
Speaker 3: The book is just.
Speaker 4: A terrific effort on your part in a QVA to
Speaker 4: create a series of thoughts, if you will, from people
Speaker 4: doing the work. Just just an amazing effort. So congratulations
Speaker 4: on that. I was very humbled to be part of it.
Speaker 4: So I'm going to take a position here that may
Speaker 4: be a little bit controversial, and that is that on
Speaker 4: the opposite side, people become paralyzed in industry because of
Speaker 4: that worry. Am I getting enough input? Am I doing
Speaker 4: enough to get a generalized population? And what happens as
Speaker 4: a result of this paralysis.
Speaker 3: Is nothing moves forward.
Speaker 4: My argument is do what.
Speaker 3: You can do.
Speaker 4: Talking to patients in any geography and outside of any culture,
Speaker 4: in any age group is better than not.
Speaker 3: Talking to them.
Speaker 4: And connecting it to action is the most critical piece.
Speaker 4: So when we engage patients, I tell my teams all
Speaker 4: the time it is not a one and done. Get
Speaker 4: all the information you can from this population. When we're
Speaker 4: working with researchers, it is a longitudinal engagement activity that
Speaker 4: parallels the research, development and delivery process. So we're engaging
Speaker 4: and analyzing and reporting, and engaging and analyzing and reporting
Speaker 4: multiple times through the life cycle of a molecule's development.
Speaker 4: Do what you can do in reasonable ways to get
Speaker 4: as much information as possible in multiple formats, by interviewing
Speaker 4: group patients, by interviewing in different geographies, by interviewing.
Speaker 3: Patient in engaging patient.
Speaker 4: Groups, by looking at literature, and some diseases they're well,
Speaker 4: very well defined already where there's been a lot of
Speaker 4: engagement activity. Use everything you can use, and now with technology,
Speaker 4: there's ways to expand that understanding. But do what you
Speaker 4: can do, be relevant, be engaged, be actionable, and that
Speaker 4: is the beginning of a truly functional patient centricity activity.
Speaker 2: Tell me, then, how we can think about this benefit
Speaker 2: for multiple groups. We've talked about spending a number of
Speaker 2: years in routine clinical care at the bedside before coming
Speaker 2: into FARMA, but we talked a little bit about the
Speaker 2: engagement of advocacy organizations and other groups. The return on
Speaker 2: engagement for Estellus is something that you've spent a chunk
Speaker 2: of time thinking about and defining and showing what about
Speaker 2: the other group? So what how how do you encourage
Speaker 2: either patient advocacy organizations or medical charities or other groups
Speaker 2: of people to engage in research with the industry, and
Speaker 2: how does that engagement benefit both them and the clinical
Speaker 2: decision making Contexte.
Speaker 4: I made a promise when I started at Estellas in
Speaker 4: twenty nineteen. I made a commitment that any patient group
Speaker 4: that works with us out of Styllist, I guarantee you
Speaker 4: you're not wasting your time. The information that you gave
Speaker 4: us will be made actionable and will be integrated into
Speaker 4: the work that we do. Doesn't mean we're going to
Speaker 4: be successful, but you will not have wasted your time.
Speaker 4: And that's one of the biggest complaints of the patient groups.
Speaker 4: I've told my story one hundred times and nothing ever
Speaker 4: comes of it. Nobody ever gives back any more information
Speaker 4: as to how it was used. Well, we stop that,
Speaker 4: and in fact, in the books I end one of
Speaker 4: the chapters with a letter to patients that we should
Speaker 4: be able to write if we fully engage in the
Speaker 4: right format and the right patient centricity process, saying to
Speaker 4: them today's different you are going to be able to
Speaker 4: proudly go to bed and know that your information helped
Speaker 4: us create a solution.
Speaker 3: So where's the alignment, where's their incentive?
Speaker 4: Is that if you're truly authentic and you absolutely use
Speaker 4: the information effectively, that trust becomes as hard as steel,
Speaker 4: you know, it becomes this sort of Okay, I understand
Speaker 4: that you can't guarantee me a product or a solution,
Speaker 4: but I know that my time is well spent with you,
Speaker 4: and that's the authenticity of what we need to make
Speaker 4: sure we present in a.
Speaker 3: Real way to patients in patient groups.
Speaker 4: That is connected, that is truly actionable. That's what they want, right.
Speaker 4: You can't take every shot on goal doesn't land. But
Speaker 4: if you're making the best effort possible utilizing the information
Speaker 4: in real ways, nothing more can be promised. And that's
Speaker 4: what we promise the patient group. So what is in
Speaker 4: it for them? It's an authentic, real.
Speaker 3: Effort to gather to develop a solution.
Speaker 4: It is not we're going to take your information, describe
Speaker 4: it and never use it. You're wasting your time. Instead,
Speaker 4: it's you're part of this. We're using your information, and
Speaker 4: we'll come back to you and let you know how
Speaker 4: we've used it. That's the difference, and I think it's real,
Speaker 4: it's important, it's measurable, and it's respectful to the patients
Speaker 4: we're working with.
Speaker 2: That's really encouraging to hear because in all of the
Speaker 2: engagement situations we have with patients, there are two words
Speaker 2: that come up frequently and you mentioned them both, and
Speaker 2: that's authenticity and trust. And trust in particular is something
Speaker 2: we hear a lot about people wanting to ensure that
Speaker 2: they're offering their time, their experience, demonstrating a degree of
Speaker 2: honesty with you that that information is going to be
Speaker 2: used in a way to the extent possible that can
Speaker 2: help to drive things forward.
Speaker 3: Yeah.
Speaker 4: Absolutely, And you know, working in this space with these
Speaker 4: methods and these kind of conversations, you and I talk
Speaker 4: about these things very frequently. You're one of the most
Speaker 4: patient centered thinkers that I know. The work that you're
Speaker 4: doing is truly meant to be for the benefit of
Speaker 4: the people who are waiting and helping us develop solutions.
Speaker 3: This is real. This is the time.
Speaker 4: Today is the day where everyone who's thinking about this
Speaker 4: should put away the idea that.
Speaker 3: Someday and make it today.
Speaker 4: This is the time There's never been better opportunity than
Speaker 4: right now for patient centricity to be the disruptor and
Speaker 4: the solution in a very chaotic health care environment.
Speaker 2: Ill come think of a better way to finish chanty.
Speaker 2: Thank you for your time today. Thank you for sharing
Speaker 2: your experience with me. I always learn things from you,
Speaker 2: also with everyone else, and thank you for what you're
Speaker 2: doing at Estellus and for patients everywhere. So it's very
Speaker 2: much appreciated.
Speaker 4: Thanks Matt, I appreciate you. I truly do. I love
Speaker 4: having these conversations. Thanks for your time, and I hope
Speaker 4: to continue to work with you to make a difference.
Speaker 2: Thanks anthing.
Speaker 3: Thank you.
Speaker 1: This Farmer Talk radio podcast featured doctor Matthew Reeney, scientific
Speaker 1: lead of Patient centered Endpoints at Aquvia, and doctor Anthony Yanni,
Speaker 1: SVP and head of Patient Centricity at Estellus on the
Speaker 1: current state and value of patient centricity within the medicine
Speaker 1: development process. For more information, you can visit the conferenceforum
Speaker 1: dot org. Thank you for listening.