Evolve Your Organisation for a Patient-Centric Ecosystem

Well good morning to you all! It’s a real pleasure being with you on this Monday morning! My name is John Rountree. I’m the Managing Partner of Novasecta and I’ll be leading and structuring the discussion today. I’m delighted that we’re able to kick off this NEXT Pharma Summit Patient Week and our topic is basically how to evolve your organization for a patient-centric ecosystem As I said, I’ll be structuring and leading the discussion and I’m delighted to have a hugely experienced panel with me. Nansa, Camilla and Orientina and we will be sharing perspectives on this topic. Just a housekeeping point, please do submit any questions you have on the chat function and will do my best to put those into the structure of the conversation, as it goes through The only thing I’d like to do next is then to introduce the panel and then tell you about the structure of the conversation. Orientina, as you can probably see, has got some trouble with audio at the moment, but we are fixing that as we speak and we thought it was best to continue with the conversation anyway. So let’s start with the panel introductions. I am John Rountree, as I mentioned. My background is consulting for 35 years and I’ve spent the most recent 20 years of that or so focused on pharma and biotech. I’m now the Managing Partner at Novasecta and we’re a strategy consulting firm, only pharmaceuticals works with leaders in this fantastic industry to help get more from their teams functions and organizations. So I’m going to go around the virtual room here and if you can just give me your name, your background, your company and your current role that would be fantastic and then we’ll get on to the structure of the discussion So, Nansa, do you want to kick us off here and with your introduction? – Thank you very much, John, pleasure to be here with you My name is Nansa Burlet, I’m the Patient Partnership Lead at Kyowa Kirin International and I work specifically on connecting the patient community with pharma industry. My background is a medical background and I’ve been working in pharma industry for 11 years, but also in a non-for-profit organization with patients. Thank you very much! – Thank you, Nansa. Camilla, do you want to go next? Sure! Good morning, everyone. My name is Camila Lauritzen and I work for LEO Pharma. I head up the Patient Engagement Function, which is a function, has many names, patient affairs, patient relation, patient engagement LEO. I’ve been doing this at LEO since almost three years. Before that, I created the function in a number of other companies. I’m delighted to be here The role of the function is basically to make sure that all key decisions within the company, from early research BD and NPP until life cycle management, are bolstered by insights and advice from patient and primary research on patients Thank you. – Fantastic. Thank you, Camilla. I will briefly introduce Orientina, because i think she’s had trouble with the sound. But Orientina is basically the General Manager of ZCare, which is a spin out from the Zambon Group Pharmaceutical Company and her background is in marketing. So essentially, what you can see around the table here, is you’ve got three people that represent really the most important… whoa! Hello, Orientina! You’re on. Marvellous! Welcome! – Only with ear cups. – That’s okay, don’t worry We can hear you. Thank you for joining us, Orientina I did an introduction to you a moment ago, I don’t know if you heard it, but I hope it did you justice. We’ll see from Orientina later, how she contributes. But what I was saying is, we have three of the key functions, I think Camilla, which is a long background in patient parts of organizations, with a patient title, as you mentioned, engagement, enhancement, partnership and Nansa’s background is medical affairs, which is also a critically important role, as we go through with the patient-centric and Orientina’s background is doubly interesting because of the marketing background originally in Zambon and now very much at the very front end of healthcare in, as she’ll explain to us, in what she’s doing in parkinson’s disease through ZCare So it’s great to have such a fantastic panel here. So what I’d like to do, today’s structure is: we’ll have three basic buckets of topics One is let’s talk about the patient-centric ecosystem itself, secondly let’s talk about activities that pharmaceutical companies are

pioneering and leading to engage with that ecosystem and finally, let’s look internally to the pharmaceutical company to say how are the organizations behaving internally. So let’s go right ahead then with the patient-centric ecosystem. And the traditional way of the ecosystem is to think about patients/physicians/payers, the classic way of thinking about it But my first question to this panel group, that’s got a lot more experience of this than I have is, how do you think about the ecosystem and where does this, perhaps old-fashioned term ‘patient’, fit into it all? And since nobody’s heard from Orientina yet, I’ll ask Orientina to kick off this discussion. – Oh, my god! Okay, first of all, it’s somewhat new to talk about that community as an ecosystem. I mean, we’ve been thinking to healthcare as an industry, including pharmaceutical, pharma companies, the hospital, the healthcare system, the NHS in the U.K. and doctors and then patients But in reality, facing the challenge of an aging population, that’s in my opinion the main driver. We realized that taking the old approach wouldn’t let us cope with the big challenge of getting aging in increasingly aging population in hundreds of millions in Europe, that we can’t really help and cure with that approach. So we need to empower patients, if you want to keep our fantastic healthcare system, the universal model we have here in Europe, coping with the challenge of chronic disease. So taking the ecosystem approach means to look at the patient as an actor, within a team. So the patient should be, this is what my friend Basbloom loved to say, the patient must be the coach of the team. So he must be the one who drives design the strategy. So now, that’s somewhat a sort of a dream, but this is where we have to get, in order to make this system still working in the future Excellent, okay. Thank you. I think that’s a nice way to frame the patient at the center, rather than at the end of the stream. Perhaps, Camilla, you can add something in terms of how you’ve defined it over when you’ve talked about these patients over your career, trying in different companies to get this voice somehow in? I mean, sure, I cannot agree with you more, Orientina. Obviously, what you’re saying is not only the future, I think it’s actually the present in some companies at least But to your point, John, at the beginning, I mean 20 years ago, when I started working this field, the patient was seen as an end user of a compound, a product, if you want and it was seen as a subject in a clinical trial in the story and coming from the world of patients, I was like totally puzzled by this, because working for patient organizations, I knew that pharmaceutical industries were actually at that point in time keen to try and figure out how we could work together and so that became my start But anyways, the patient, to Orientina’s point, is the expert, a disease experience expert, he or she lives 24/7 with a condition and there is nobody who knows that better than the person living with this. That’s one perspective. The other perspective is, it’s not about them and us. We are them, they are us. So I don’t know, I never work for a company, even a company of five people, where there haven’t been one who is a patient in there So it’s about forgetting this ‘them and us’ and thinking of us like one and using the power you have within organizations, such as the one I’m working in now I mean, in my team there is a patient, he has eczema and he’s a total expert. He’s the first sanity checking point in my team, when we are going out to help the rest of the company doing, for example, a very intelligent way of thinking of deciding clinical trial or endpoint and so forth. He’s the first sort of point of sanity, that we check on, so putting that understanding inside your head and actually enforcing it, enacting it, I think that’s where we are and that’s where we should be, whether we speak academia, industry, whatever Very interesting, yeah. And, Nansa, I think we talked before about this word ‘patient’ as being somehow a strange term, in all of this. As Camilla was mentioned, we are all, it’s not them and us anymore, there’s something, we’re all patient. Be interesting

your perspective on that too. – Yeah, yeah, absolutely That’s very interesting, because we talk a lot about patients, but my first consideration, when we discussed together, John, and the rest of the team was, for me, it’s very a reduction and it’s very limiting an individual to a condition, sometimes multiple conditions, but I think it would be more respectful to talk to people, and say people living with a condition, XYZ condition, so that it opens more perspectives, positivity about the fact that they are not only the person who is suffering from Parkinson’s, for example, but it’s an individual with rights, with a lot of beautiful things and that helps, as well, the health care professionals to have a different view as to whom they are talking to and consider the person with much more perspective and someone who has much more things to share But that also leads to another point, that I think here it would be interesting to tackle It’s about the people who helps the patient living with the condition, because they, I mean, they have the name of caregivers, sometimes carers, but I think it’s really important, as well, to put them into the ecosystem of people living with a condition. So that would be my view on this question. – Thank you. Yeah, so in a sense what we see is the patient as being the disease experience expert and actually the center of this and the traditional pharma industry going to the physician first. And indeed, the whole structure of the healthcare system has been around physician specialties and I think, as you mentioned, that a patient lives with many conditions and you’re almost breaking all those boundaries of disease and then drug and then phenotype and indication and it’d be really interesting to sense move on to the topic now of externally engaging with this ecosystem. I mean, if we think about it, as not them and us, but externally, how to actually go through that external engagement? That would, I think, be something we should explore before we come back to the internal side of it. And perhaps Orientina on this one. You can just mention something about the ZCare and that, because ultimately that’s the, in a way, an extreme of the system, where Zambon created the spin out to do this in a very patient-centric way and just how does that work and contrast it with the pharmaceutical industry and then we’ll hear from the other panel members In a few words, we really decided to do something extreme, so we spin out, we made a new business We are actually a care provider, authorized by our authority and we combined a professional with digital technology in order to bridge this famous gap of continuity of care and provide patients with Parkinson’s disease, in our case, with daily support in managing symptoms and living with the disease So we move, for instance, our focus from modifying disease or controlling disease to quality of life, living with the disease and we moved our focus from doctors to patients. Doctors are still working with us, the vision are involved in that activity, but they are part of a team that we are coordinating through telemedicine. And actually the people living with the disease and the carer are our main focus and they’re really at the center of the team, that our technology enabled us to coordinate as a team and no longer as individual specialists that are making their job, and at the end of the visit say ‘goodbye’ to people and ‘see you in six months’. We made a very extreme choice, but I’m sure that there are grades at which within a traditional pharmaceutical company this approach, this patient-centered approach can enable fascinating new ways to make your daily job and generate great value for the ecosystem Because, in a sense, if the whole organization is geared around that patient, you’ve taken a disease

area, but you’ve taken a patient approach to that, which means that these people suffer from other conditions, as well. – An example, when we design this new business, we adopted the design thinking approach. That means that from the very first step, which is the investigational one, so let’s gather people living with the disease, carers and doctors inside, let’s understand their needs So we didn’t make focus group, we made observations, so we went into the practice, we stand close to the doctor and we observe, we recorded the way he act, the way people and carer talked to him and we did it with hundreds of people with this ethno-methodological approach, because what we wanted to gather is not simply giving insight. In marketing, we spend, I used to spend a lot of money to gather the patients insight or the doctors insight. This is not about insight, this is about the experience, the community, which the healthcare system is the ecosystem, the experience they do and the way they go through that. So it’s something more about real life, the life, the daily life of people, so it’s a completely different way to watch the community where you are working with and providing value to them. – It is a different way and, in a sense, someone spun it out. But Nansa and Camilla, you’re both still within pharmaceutical organizations themselves, so how do you meld this observation and ethnography and getting the voice? What are some of the activities you’ve done to make sure that voice comes into a pharmaceutical organization, rather than a telemedicine and healthcare spin out of a pharmaceutical organization? Camilla, perhaps you can go first and then Nansa Sure, I’m happy to. So basically, what we have done is, we have opened the door to the people into the machine room. So we have said to them “what we are trying here to make a real difference for people with your condition or with a combination of conditions”, and precisely to Orientina’s point, we need to understand what is life, what does your life look like, what is the ecosystem that your life, that you’re part of, that your disease exists within and so forth And then, being very very systematic about this, considering them as experts, because they are experts and working with rigorous methodologies, that have been to some extent, some of them have been developed with disease, various experts over time, over years, in different disease areas and validated. Obviously, we also do quantitative research, because if you’re gonna make a billion dollar investment into, let’s say a new R&D program, you need to have invalidated in addition to the call. So having the qualification and the quantification of the issue is extremely important And this is where, I think, I’ve learned more coming to learn, more that the combination, so the mixed method approach is extremely key in patient engagement, because if you only apply the qualitative research, you may run the risk of people who are sitting at the end of the table, deciding on these billion dollar investments, that they don’t get so comfortable, unless they have the N, as well. So we work with the patients on the qualification of the issue, but also with the patients on the quantification of the issue Integral to that is, we sit in the same room, physically I mean, not in these days of COVID, but then we sit like in this room virtually. – Yes, and how does that interface with the market research, the traditional, if you like, market research, that Orientina was mentioning, that you normally do, and you get your customer insight? How do you meld those two inputs essentially into the process? At which stage of process? – So in to some extent, there are happening in parallel, so market research tend to be secondary data points on patients, you ask physicians about patients or you ask panels about patients at large We go about it in the sense of making sure that our understanding of the community is direct, meaning we go out and we directly engage with the community leaders and we deliberately relate with the community as such, as well as what we call the average Mr and Mrs Smith human being So we very carefully consider patients, if you want in three categories. The patient key operating leaders, those are the ones that lead organizations, so in addition to being affected themselves, they have been, this is typically the case in Europe, vetted through a political system that

is called a patient organization and they end up leading that organization. They can then become leaders of European Alliances, plus and plus and plus. So they, in addition to their own experience, represent that of many others. Those are around 1% of patients. Then the bulk is the other category, in the other end, but in between there you have around 9% of all patients, who are the ones that invest themselves in patient organizations or communities. So they actually identify, in addition to being, let’s say, myself Camilla, they decide to be part of a community and are active in that community But the vast majority of all patients, around 90%, would be actually me, if I was a patient, which I will become one day, which is a person who decides to exterior or internalize, if you want, the condition, because I want to be me, I don’t want to be associated with my condition. I go to work, I’m Camilla, I’m not going to be part of an organization that reminds me that I’m a patient That’s the vast majority, but all three tier levels are crucially important in the medicis R&D. – Very important. Thank you and actually, one of the things came through the chat. We are all people waiting to become patients is echo of what you were saying, Camilla And Nansa, your role in, as part of medical affairs, and then coming into the patient partnership mode, can you tell us a little bit about how you find external engagement in the same way that Camilla and Orientina have been doing? – Yeah, and I have to be very humble here about my position and about my new company, because I used to work in a bigger company, whereby public affairs used to be the owners of the engagement with patient associations, patient groups and by moving and by joining a new company, which is Kyowa Kirin International, where the position of patient partnership lead has been designed, it was absolutely clear from the very beginning that we would partner with patients, but essentially patient associations, but it was also very clear that we would consider the people living here with a condition, as resources And we wouldn’t take this approach which is “let’s be patient-centric”, because actually we are surrounded by people living with a condition or that people who don’t know yet that they will be living with a condition, so the approach was “okay, let’s forget about this terminology, which is patient-centricity, which I think is maybe fine 5-10 years ago, which has been overused. Let’s think differently and let’s think about engaging with groups of people who wants to be part of the development of a drug or a solution”. And when I say a solution, it could be literally beyond the therapeutic or beyond a prophylactic drug, but it’s literally something that would help people living with a condition have a better quality of life, have a better experience about what they do, what they feel, what they they live and that could be connected with, let’s say, a companion tool, being a digital companion tool. So our approach at Kyowa Kirin International, which is going to start up and to take off is- let’s partner with patient association or patient advocacy groups, they’ve got this terminology, we’re not going to change it, but let’s partner with them, let’s tell them what is our ambition or what are our views about having people participating in the different aspects, from drug discovery to loss of exclusivity, and let’s make sure that at every single stage there is a group of people, and back to what Camilla said, could be patient experts with a very strong curriculum, it could be people like XYZ just participating in a survey and providing some sort of feedback as to what we do. And there there will be a different stage, different sort of different categories of people living with the condition, so that when, well in 10 years from now, when we finally get the registration, we’ve got something that fits the needs and the challenges that people living with the condition have. So that’s really the idea of involving as soon as possible, a group of people that can tell us, that can orientate us and eventually do co-creation. And we go back to design thinking, that Orientina mentioned

It’s all about this, it’s all about making sure that it’s not coming from the the mind of scientists, researchers and people who are absolutely disconnected from real life, but it comes from the ecosystem and a group of people and again, it’s not being patient-centric, but it’s being patient surrounded and taking into consideration what they say, so that we deliver the best solution possible. – I think it’s fascinating we get to this point of insight about that group and that ecosystem of the carers and the physician and the patient and the whole system and we come back to data, and we’ve a couple of times mentioned digital and medical affairs has always been the sort of center, if you like, of the medical data and you form groups and, as Camilla said, you’ve got some groups of patient organizations, patient advocacy and so on, and other patients that aren’t engaged with communities or 90%, but how is the pharmaceutical industry placed, compared to, if you like, the tech industry, to lead the charge in this sort of engagement? Because it is going to come down to data and it’d be really interesting to explore. When you think about externally, the pharmaceutical industry makes drugs that patients take is the kind of old-school approach, but now, perhaps, it can take a leadership role with engaging with this ecosystem, where perhaps tech thought maybe “well, we sit on the data, we can do that”. So it’d be really interesting to get the panel’s perspectives on- is this a pharmaceutical job or is this somehow the tech company is going to take this? Because pharmaceuticals make drugs, don’t they? Orientina, you’re perhaps involved with this digital side of it and is it a pharma job or is it a tech company job? – Well, who knows! I mean, people used to think that this is more a tech giant market, because I mean, they are probably more eager to do that job, than we are But in my experience, for instance, in our startup, what we did is to borrow the best technology, major technology available in the market. There was no way to develop it It would have been crazy, it’s really mature, it’s good, even prices are low, because it is a mature technology. And what we did is to inoculate into the technology configurator, technology in a way that only a former pharma professional can do, because in pharma companies we have been raised thinking that we were talking to doctors, but doctors are heavily regulated, there’s a regulator, there’s a failure, there’s the patient, then the patient association. So we do have ecosystem in our DNA. What we have to do is to evolve the way we look at the ecosystem, because every stakeholder has changed over time and it is still changing, so we have to provide us with I mean new methodology to investigate the ecosystem, to listen to people, to understand even doctors, even physicians, there is a generational change ongoing there, we need to be able to catch it and not to keep talking to the dear old doctor we have been talking the past 20 years But in my opinion, we are in the best position to play a major role in this changing industry Probably this is not in the radar of every company, probably… okay, I mean, former companies are developing advocacy departments, they are catechizing marketing in order to encompass the patient perspective. Probably, what I’m saying is that we should dare do more than that ,but I think we have a competitive advantage, versus tech giants. Because tech giants, they have a lot of money, they have a technology and they are very quick when they take the decision, but the healthcare market is so heavily regulated, especially in Europe, it’s so complicated, especially in Europe, and so delicate, that you can’t, I mean, move into that market, as Facebook did in the entertainment market 20 years ago

It’s not just like that and what is at stake, I mean, it’s our health, as Camilla said at the very beginning, we all are patients. I’m 57, I’m a baby boomer and I don’t know, but I’m sure I am developing something and I do want personally, as a person, not only as a professional, to defend the wealth of this way of doing, of dealing with the health people, so I think that we are really… this is not only a responsibility we have as a professional or as a companies. It is something… we have the duty as citizens in Europe to take care of and actually we are in a good position to do that. – I believe so, yeah. Yeah, absolutely And in a sense, the pharma industry does have that understanding of the insensitivity, I think, to the ecosystem, even though it may have a reputation from some quarters that it’s all of the bad press about the pharma industry. It isn’t indeed a point of advantage and perhaps, I don’t know, Camilla, I’d like to ask you on this one, because I think LEO went quite early and actually some of your previous companies went quite early into this patient framing, of how it positioned itself and counted measures, like the number of patients treated, rather than traditional revenue and so on. And I don’t know, if that was perhaps, because it’s a foundation that runs it, but perhaps you can tell us a little bit more about how LEO’s taking on this mantle, if you like, of engaging with the patient? – Sure. So we have basically developed the patient strategy at LEO, as well as my department together with patient KOLs So that happened when I was three months old at LEO, we had a big summit where I invited my peers in the patient world, I’ve worked with, since, many of them, since more than a decade and I said “you know what? We at LEO want to do something, which is raising the bar on everything, which is highly aspirational, but still achievable Will you help?” And I mean, they all said ‘yes’, because they have all told me since the beginning of our relationships that “what you’re doing, your business is our business It’s very important for us what you’re doing, so hence we want to be part”. And that’s what I talked about. Open the door to the machine room and I said “okay come inside and help us define”, so they came in and they helped us define. So that means that it was okay, that’s in you can say almost, you take it on you, from the very get-go, that commitment. So it’s about strategy, it’s about the capability to execute on the strategy. So everyone in my team, for example, they’re not public affairs guys or girls, they’re not medical affairs, they’re patient engagement specialists and this is a new function in pharma and I’m spending a lot of time actually talking about that, because it is really important, it is not … appearance, it is not the public affairs, it’s not reg affairs, but we are very close peers, we work very closely with these other functions on the database and I think that is the, you can say, core criteria for success, that is simple as this. When you want to do something for a group in society, you need to be a reflection of that group in order to understand the need in that group, right? So people in my team, many of them are yes, they’re patients, but they are also people with different skill sets to actually internalize, get the understanding internalizing qualified quantifies, as I mentioned before, and make it meaningful for people inside my organization, many of which are scientists, and absolutely not used to work this way, but who sees, who understands it intuitively and once exposed to it, it’s sort of- obviously, why didn’t we do this before? Interesting, because it’s about interpreting that data, I mean, I’ve started with data, talking about the tech industry, but what you’ve raised is the sort of rich issue of, it’s all very well having data about this stuff, but you’ve got to interpret, you’ve got to live in that world and then interpret it people who don’t live in that world, because pharma is full of very specialist, functional expertise. Whether it’s scientists in R&D, in medical affairs, in public affairs, in regulatory and pharmaceutical development, you name it, and it’s interpretation and dialogue with that and I guess that’s a role of the patient function, to actually do that, to engage outwardly and then bring it back inside Sorry go ahead, Orientina. – I would say it’s startup within the company Yeah, you started it up and you can then translate. – In Camilla team,

she inoculated the entrepreneur virus and so they have to try to engage also their colleagues and involve them and convince and somewhat infect them with that approach. – Excellent, yeah How are you finding that in Kyowa Kirin, Nansa? I mean, are you able to inoculate or bring that up? – Well, we are at a stage whereby we need to accompany for change, because the beauty of being a smaller company and being focusing on rare disease is, that people do understand what it looks like being living with a condition. Because we are so closed and medical affair is so close to the families with children that have a condition, that I think people are already primed, when it comes to understanding what it is to live with a condition. But very interestingly, when you said John, that we’ve been the experts about interpreting the data, we’ve been experts in reading the reports and so on. I do believe that, yes, that’s the case. Yes, medical affairs have done the best to translate into a simple language, simple scientific language, but we’ll come back on that later, for the commercial teams and for whoever externally, but what is becoming new and I think in the future we will have to take, if you think carefully about this is, that big data is everywhere and in our future research we should also think about is equipping the ecosystem and the patients maybe with sensors, with wearable device, so that there is a continuous monitoring of their conditions, the collection of data passively, without bothering them coming back to the hospital or having someone visiting them why they don’t necessarily, they want to have a normal life, like anyone, but using these sorts of technologies, that then we’ve got a bulk of a huge number of data, a data point and here comes the interesting partnership with potentially some data organization or groups, that know about artificial intelligence and new technologies and people who are able to translate what is the huge amount of data onto something that says “the trend is that patient X, Y and Z tends to not take their treatment”, for example And we know that, because we see that the day or two days, three days before they have a certain behavior and the idea of partnering with tech, high technology or big data technologies it’s very interesting and I think very powerful, because, again, the behaviors can be measured qualitatively, by having a conversation, as Camilla said. We can qualitatively measure that, but sometimes there are bias we tend to forget, patients tend to forget as well So we do have also quantitative information and that is in a longitudinal way, because the people we are gonna speak with are the same. Unfortunately, in rare disease that’s extremely true, that the same people for the next 15 years plus their offspring and so on. But here, what is interesting, is that new technology might help us identify behaviors and these behaviors are connected with outcomes and these outcomes can help us, as well, develop things that we’ve never thought about. So I see here our ecosystem as extremely, extremely interesting, because COVID19 showed us that there’s a need for new technologies to use that, but that can also help us identify the right patients for the right treatment, that can also identify, and I would use the term phenotyping, exactly who are the best responders or who are the best adherent people, because some of them can after a while they say “well, no, it’s not for me” But it’s really interesting to see that we will be, as the medical community, even more

able to provide the right solutions and see that as a very great opportunity for the future, because again, we know so much the revelation, we know so much how ethically we should behave and we should act, that we should keep the lead on that, we have perfectly legitimate, but we should use every single opportunity that is around us to better develop and better deliver better solutions for the patients. So that’s literally, I think I can see that as an opportunity and I can see ourselves, developing ourselves to become even more digital savvy and so we become the patients and so we become to use and to contact, maybe not a real person, but to be empowered and say “oh, there’s a problem, i haven’t done that much exercise today, so something may be wrong.” So that’s really fascinating as a new world, I think. – It is and I think all people talk about patient engagement a lot and essentially, patient engagement means, very literally, engaging with the patient is the obvious way to put it. But it means that the connection between the patient and the system that is providing the treatment, and I say the system, the caregivers, the physicians, pharmaceutical companies and so on, it just needs more frequency and I think that’s perhaps what’s happened a little bit in, I think, some of the things you were saying about the ZCare experience, Orientina. These Parkinson’s disease patients that perhaps had very short interactions with the position now and again, starting to get more engaged with it and that’s surely a positive sign. I don’t know if that’s how you’re seeing it – Yeah, well, actually, we started from that point in chronic diseases, not only Parkinson’s disease, people is living with a condition which is something occupying their life, every day and there’s no one helping them in coping with that Living with a chronic disease means that you have a drug that can make you living for 20, 30 years, that is not modifying the disease, simply managing symptom. But sometimes this is not the perfect control, so you have to deal with many inconvenience, side effects, complicated, of course, the same symptoms. So this requires ability in the couple of carer and personally with the disease and no one is providing them support in developing such abilities over time That’s the point. And what patients do when that happens? They go to the hospital, they call the doctor, they book a new appointment, etc. So we started from them and we developed this combination made of Parkinson’s disease specialists working with patients on telemedicine on a daily basis and a knowledge base and a customer relationship platform, that enable the whole team around the patients of their general practitioner, the neurologist in case of Parkinson’s disease, physical therapies and so on, to stay on the same page in terms of clinical information and be activated by clinical algorithms, whenever their intervention is required This is a very cheap thing that can be done thanks to technology. If we hadn’t digital technology, that wouldn’t be sustainable, because you have to imagine that nurse goes to the patient home 20 times a year, in some period of the year even 20 times a month, because the patient required the support at that time, that wouldn’t be feasible, not sustainable. Thanks to technology And the fact that we had somewhat shaped the technology, inoculated into the technology, the clinical knowledge and generated a lot of data that the technology enable us to understand in real time to take real-time clinical decisions on that person, this wouldn’t be possible. But the only technology without that knowledge wouldn’t provide any value to anyone. And let me stress the last point, which is the human, the human interaction, because I don’t know, in the future, probably in 20 years,

chronic patient would prefer human tech interaction interfaces But now, when we talk about patients in Parkinson’s, on average they are 73 years old What they not appreciate most is a personal relationship with their nurse And we have tax things, so that to provide a dedicated nurse to each patient is feasible, it is economically sustainable and that’s very important, because when you live with the disease, I mean we all are patient, of course, in two years we’ve developed something, but living with the disease is something that is scary in person. Sometimes they are shocked, so you need also to deal with the emotional part of living with a disease and exploiting human relationships. Our nurses are trained to provide motivational counseling, so when they are really in a bad situation, they sometimes call just to be reassured. But to be reassured, when you live with a disease, is a cure. It’s something that can materially change the outlook It’s redefining, really, it’s redefining what it means to treat a patient. It’s not a pharmacological treatment necessarily, it’s a treating and dealing and living and it’s also an issue of leadership. Somebody has to take the leadership to take on this role It appears that the pharmaceutical, I mean, for somebody that specializes in a particular domain, whether it be Parkinson’s disease patients or or dermatology patients, in the case of Camilla, people living with the diseases of dermatology, the pharma can take the lead in doing with that and what… there’s a question that’s come. that’s related to this on the chat, about this. What strategy and processes are actually being employed in patient engagement activities, to make sure that that data is from that patient, because the digital thing might confuse things and I’m just wondering, if perhaps Camilla, you’ve got a point of view on that, is the strategy and processes as we get more digital engagement with the patient How you’re dealing with that at LEO Pharma? If we take it generically, so either every company who deals with R&D has a, you can say, a pipeline of events, so we are all doing pretty much the same things. We’re calling it different, terminologies are different, but in essence, you have the initiation phase of ideas and then you process a compound through a number of steps. And all of those steps have KPIs, key performance indicators, and so what you can do and what the companies that I’ve been working for are doing, they basically internalize the patient as a, you can say, a crucial reference point on all key performance indicators, meaning where we used to usually in pharma only in Reckitt consulted other scientists or medical doctors, we also now consult the disease experience experts. Qual, quant, different tier levels, as I mentioned before So the digital aspect, obviously, comes into to play here, because some of the people that we you can say internalize, open the doors are open to the machine room, right, so people are in the room, people are coming in, some of them physically come into the machine room and they become part of the panels that we have, that I briefly mentioned to you guys. Others, they connect with us in the digital space, because that’s the preferred way of doing so and also we can do invalidation in the you can say, technology space that we can’t do in the machine room, but from a strategic point of view, it is pretty simple, you can say, because we have processes in pharma What is that simple is to get the mindset around actually changing this, because it’s super inconvenient to have people like me coming and saying you know, what you’ve been doing this since 100 years and you’ve been doing it great, but the future is going to demand something different So what always happens ,when I start a new place, is that people, they are intrigued about it, but it’s also a nuisance. But then, what usually is a trigger point, is when under external, you can say, powers and I’m just gonna mention the FDA here, because there are

fantastic things going on in the FDA level in the U.S. right now, since June this year. We have seen three new guidance to industries coming out on patient engagement. Three new guidance It’s more than 100 pages of guidance to industry on how, when, who and so forth and why, of course And this sort of makes my job disputably relevant, which is, of course, very good for peers around companies, but it also becomes indisputable from the sense of understanding in the greater ecosystem that it is important and why it is important. So it’s not just within companies like mine, it’s also the regulators, it’s also the payers downstream from the R&D, who are now seeing okay, so the regulators are asking industry to be making sure that the decisions are made with real world evidence, you can say. So better do that, better do that And as you say, it’s getting the qual and the quant into the organization, as you mentioned about that voice and then that interaction, because it is both data and experience with those patients, it’s like bring them into machine reminders… – And you need to be able to measure outcomes. If you cannot measure outcome in the company, you’ll have a hard business case to raise, to maintain We have to show and demonstrate that we can, for example, decrease the recruitment, so you have a window where you’re recruiting people into a trial, if you apply my function that is our claim, that’s our value proposition, you can say you’ll recruit faster. And so far, so good, also at LEO. But I know it’s a high bar to raise, but I mean, I know it’s doable, because I’ve seen now across several companies people who are engaged tend to help companies perform better and by that, we also perform better back in their hands, so it’s an ecosystem of good things happening. – It is and we’re on to the topic of the internal organization managing That internal organization. It’s fascinating how you are explaining how you put measures that are more familiar internally, of measures of success, like recruitment speed and ultimately commercial outcomes, sales, P&L of drugs. So the patient role is to link to those KPIs internally, the patient function. Otherwise, as you say, it’s a tough business case to make, you’re just a cost in the system. You can engage and link with those various measures that are important to pharmaceutical companies, that have shareholders or foundations to answer, all families to answer to, and it’s great to hear how you’ve done that? I’m just thinking also in terms of the Kyowa Kirin has evolved, as you say, from the medical affairs into the patient engagement How that has come from the top in terms of why and how this patient is going to be, this patient partnership is going to be measured? Could you tell us a little bit about that and answer as we talk about more of the internal topics? – Yes, sure. I think it’s connected to the history of Kyowa Kirin International. Initially, we are a Japanese company and this company became a worldwide company very recently, but it was interesting to see that the seniorship and senior leadership were people who were not Japanese in well, ex-Japan, and they had this culture of asking the feedback of patients, doing some market research with patients and that was kind of a surprising from the Japanese cultural perspective, because patients are just here to do the medical clinical trials, they are not here to give a feedback or a kind of some sort of their opinion about what we do But it came at a moment, where our company was changing culturally, where the senior leadership was thinking “hey, guys, we want something that is sustainable, in terms of products, we want qualitative product, we want to make sure that, even though another product comes onto the market, there will be this kind of loyalty, not because it’s cheaper or, but because they like the treatment, because they feel comfortable, because they know that they are going to be someone to answer their question anytime, anywhere in the world. And that came kind of very naturally. I’m not saying that we didn’t have to make the case to the Japanese colleagues, but here in Europe, in North America as well,

it became kind of, well we know that if we go to regulatory authorities or HTA and we don’t have the patient voice clearly explained, expressed, we’re gonna be told in a couple of years that you haven’t done your job, go back, do again your phase two and three, make sure that you’ve collected information, that are sufficiently relevant for us to put a reasonable pricing up to. And that became kind of so obvious, that having a good dossier, with good advocacy, limited adverse events is not sufficient enough. So the company made this uh kind of a big statement, which i to commit to life to work with integrity and to work as a team. So it’s three of our four values, but that’s been told as well to patient organization, because one thing that we haven’t maybe touched upon here is about building a trustworthy relationship with patient organization and people living with a condition, making sure that they are not just being used for our own convenience, but whatever they do, it’s kind of a dialogue, it’s really an exchange, not a transactional exchange, whereby we give money and we collect data. But it’s literally kind of a true partnership and it’s based on trusts, it’s based on transparency and it’s based on ethics Here’s something that is really, really difficult to build, because again, I’d like to be trusted, but it’s not up to me to say that, it’s up to my partners to tell me “you’re trustworthy partner, we would like to continue.” So I think in a way for me, for my role. For the rest of the company, it’s to make sure that at every level of the company organization there will be the same trust that is being created and being totally open to what we do and again, if we have to open the machine room, we’re gonna do that, if it’s not necessary, because it’s confusing, maybe we don’t do that. But we have to share information in due time with the right person and again with the right language and semantics, because otherwise we are not trustworthy, I think. – I think that’s a lovely way. I think we ought to wrap up now and I’m sure we could go on talking an awful lot longer about this topic. It’s fascinating, I think, the themes, if you like, that I’d like to pull out is, one- the leadership theme that the pharmaceutical industry can and is leading this engagement and thinking about the ecosystem and is very well placed for that and secondly- it’s almost reimagining, linking that patient experience internally with the organization, in terms of metrics the company understands, recruitment, marketing, regulatory dossiers, things linking and interfacing seems to be key to this. And I’m delighted to hear the experience and so really in the interests of time, I will now close the call, because I know people are on Zoom these days and you’re going straight from one to another. So I’d like to respect that But, the last thing clearly, is to thank Camilla and Nansa and Orientina very much for this panel, for kicking off the NEXT Patient Week. It’s been a real pleasure having this conversation with the three of you and I’m sure that come listening in have enjoyed your perspective, so thank you very much indeed! It’s been a pleasure and I’ll close the webinar at that point. Thank you! – Thank you! – Thank you very much!