WEBVTT 1 00:00:03.240 --> 00:00:07.400 Welcome to Pharma Talk Radio. I'm Danny McCarthy. Today's podcast 2 00:00:07.519 --> 00:00:10.640 focuses on the current state of patient centricity within the 3 00:00:10.640 --> 00:00:16.800 biopharmaceutical industry. In this conversation, doctor Matthew Reeney, scientific lead 4 00:00:16.879 --> 00:00:20.839 of Patient Centered Endpoints at IQVIA, and doctor Anthony Yanni, 5 00:00:21.480 --> 00:00:25.480 SVP and head of Patient Centricity at Estellus discussed standing 6 00:00:25.519 --> 00:00:29.800 up patient centricity functions within large organizations, proving the business 7 00:00:29.800 --> 00:00:32.399 case for doing so, and the value of getting patient 8 00:00:32.439 --> 00:00:36.200 perspectives in the medicine development process. I'm going to hand 9 00:00:36.200 --> 00:00:37.600 things over to Matt to be in. 10 00:00:38.439 --> 00:00:40.679 Thanks Stanley in It's a real pleasure to be here 11 00:00:40.719 --> 00:00:44.039 with Anthony. Anthony and I go back a few years 12 00:00:44.079 --> 00:00:47.000 from when we worked together at Sonofi. There was a 13 00:00:47.119 --> 00:00:49.880 team at SONOPI that we were part of that was 14 00:00:49.960 --> 00:00:54.679 really there to understand the patient experience from early drug development, 15 00:00:54.759 --> 00:00:58.880 understanding people's experiences of the disease and the treatments that 16 00:00:58.880 --> 00:01:01.799 they're experiencing as part of routine care, all the way 17 00:01:01.799 --> 00:01:05.319 through to how we can collect that information from patients 18 00:01:05.359 --> 00:01:09.120 as part of clinical trials and use that to inform 19 00:01:09.280 --> 00:01:13.400 decision making and into routine clinical care. And then we 20 00:01:13.439 --> 00:01:17.000 went in slightly different directions. You went over to Aestellus 21 00:01:17.000 --> 00:01:20.000 and the head of patient centricity there, and that's something 22 00:01:20.040 --> 00:01:22.359 I'm really interested to learn a little bit more about. 23 00:01:22.400 --> 00:01:25.000 You've got a bit of a unique team there, and 24 00:01:25.280 --> 00:01:28.280 I headed out to IQVI and the head of Science 25 00:01:28.319 --> 00:01:31.920 and Analytics and the patient centered Solutions team. But our 26 00:01:31.959 --> 00:01:36.319 parts of week back together actually relatively recently, because they 27 00:01:36.359 --> 00:01:39.799 published a book called A Bandana and a Bluebird, which 28 00:01:39.879 --> 00:01:43.920 was all about patient centered healthcare systems, and then you 29 00:01:44.079 --> 00:01:47.319 kindly agreed to contribute to a book that we were 30 00:01:47.319 --> 00:01:51.239 putting together on the QVA side, asking about patient centricity 31 00:01:51.319 --> 00:01:55.359 within the biopharmaceutical industry and where we are and how 32 00:01:55.400 --> 00:01:59.239 we're doing. And it was really interesting getting your perspective 33 00:01:59.319 --> 00:02:03.719 on how things are, given that you've not only focused 34 00:02:03.719 --> 00:02:06.359 on the patient centered healthcare system but also tried to 35 00:02:06.439 --> 00:02:11.280 integrate those concepts and those principles within the drug development arena. 36 00:02:11.800 --> 00:02:13.960 And so I wonder whether you could talk to us 37 00:02:13.960 --> 00:02:16.800 a little bit about your team ASTEATUS. I'm really intrigued 38 00:02:16.800 --> 00:02:17.599 to learn a bit more. 39 00:02:18.520 --> 00:02:20.479 Yeah, thanks, Matt, it's great to be here with you. 40 00:02:20.479 --> 00:02:21.879 You've summarized it quite well. 41 00:02:21.919 --> 00:02:25.000 Our paths have converged many times, and it's been great 42 00:02:25.039 --> 00:02:27.120 that you know, over the last year or two we've 43 00:02:27.159 --> 00:02:29.479 connected intermittently but very meaningful ways. 44 00:02:29.479 --> 00:02:31.360 I think to really. 45 00:02:31.120 --> 00:02:35.120 Try to advance this idea of patient centricity. 46 00:02:35.319 --> 00:02:37.639 My transition over the years I've been in. 47 00:02:37.520 --> 00:02:40.120 This space for about fifteen years, it was about how 48 00:02:40.159 --> 00:02:45.199 do we convince people that patient centricity was an important 49 00:02:45.240 --> 00:02:48.400 part of the future, because back then when I first 50 00:02:48.439 --> 00:02:51.800 started in this space, nobody was talking about engaging patients. 51 00:02:51.840 --> 00:02:55.960 It was truly those words were never put together patient engagement, 52 00:02:56.159 --> 00:03:00.479 you know, fifteen seventeen years ago, and the first time 53 00:03:01.039 --> 00:03:03.800 I remember raising it in the research space, there was 54 00:03:03.960 --> 00:03:05.520 a revolt in the room. 55 00:03:05.400 --> 00:03:07.639 Saying, you're crazy if. 56 00:03:07.599 --> 00:03:09.560 You think we're going to add another variable to the 57 00:03:09.639 --> 00:03:13.159 very complex work that we do. And slowly, over time 58 00:03:13.319 --> 00:03:17.319 they realized that there was a value to understanding what 59 00:03:17.400 --> 00:03:20.319 it is they're trying to achieve in the exam room 60 00:03:20.599 --> 00:03:23.560 with their primary customers, which is which are the patients. 61 00:03:23.560 --> 00:03:28.240 And so when I transitioned to Stellus in twenty nineteen, 62 00:03:28.360 --> 00:03:32.520 it was a great opportunity to create version two point zero. 63 00:03:32.599 --> 00:03:38.159 Learning from the past lessons in the first iteration and 64 00:03:38.719 --> 00:03:42.719 understanding the impact more so than the language. You know, 65 00:03:42.759 --> 00:03:45.319 we get lost in language in pharma. We talk about 66 00:03:45.800 --> 00:03:49.120 similar words with different meanings, you know, engaging the patient 67 00:03:49.639 --> 00:03:52.879 in the in the past, the commercial world used it 68 00:03:52.919 --> 00:03:57.159 and had a completely different meaning than what researchers would 69 00:03:57.240 --> 00:04:01.319 consider meaningful engagement and what patient centricity would consider the 70 00:04:01.360 --> 00:04:04.400 goal of engagement. So when I came to Estellus, I 71 00:04:04.439 --> 00:04:06.960 was able to create what I consider to be a 72 00:04:07.159 --> 00:04:11.719 very meaningful, actionable set of teams that work with the 73 00:04:11.800 --> 00:04:17.959 traditional research and development process and delivery process to include 74 00:04:18.199 --> 00:04:22.800 analyzes that have patient insights, physician insights, caregiver insights as 75 00:04:22.920 --> 00:04:26.319 part of them, so that we can make better decisions 76 00:04:26.319 --> 00:04:30.120 at all decision points in research development and delivery that 77 00:04:30.240 --> 00:04:32.160 include an understanding of the. 78 00:04:32.040 --> 00:04:33.079 Customer the patient. 79 00:04:33.759 --> 00:04:36.879 So right now we have a highly specialized team that 80 00:04:36.959 --> 00:04:40.360 helps bring the exam room into the research lab. So 81 00:04:40.519 --> 00:04:43.519 researchers now understand, Okay, I understand what the science is, 82 00:04:43.600 --> 00:04:44.920 but patients don't buy science. 83 00:04:44.959 --> 00:04:45.879 They buy medicine. 84 00:04:46.279 --> 00:04:48.439 How do we link that science to the need and 85 00:04:48.560 --> 00:04:50.839 value that's out there in the right patient population. 86 00:04:50.959 --> 00:04:52.319 That's what this first team does. 87 00:04:52.639 --> 00:04:54.199 We have a team that looks at the patient in 88 00:04:54.240 --> 00:04:57.920 the real world setting, truly understanding the. 89 00:04:57.920 --> 00:04:59.199 Patient where they live. 90 00:04:59.319 --> 00:05:03.079 We know clinical trials are not similar to the environments 91 00:05:03.079 --> 00:05:07.000 the patients live in, and we need to understand the patient, 92 00:05:07.240 --> 00:05:10.839 their environment, their ability to access care, their ability to 93 00:05:10.920 --> 00:05:15.360 access careers, and we need to understand the symptoms that 94 00:05:15.480 --> 00:05:21.120 exist in their life even beyond the disease fatigue, insomnia, anxiety, depression. 95 00:05:21.720 --> 00:05:24.600 If we're going to deliver care in not treatment, we 96 00:05:24.639 --> 00:05:27.439 need to understand the patient where they live. We have 97 00:05:27.480 --> 00:05:30.720 a team that partners with patients globally. We've moved away 98 00:05:30.720 --> 00:05:35.199 from transactional relationships and tried to create bidirectionally beneficial relationships 99 00:05:35.240 --> 00:05:39.079 where patients can provide us with their expertise and their 100 00:05:39.160 --> 00:05:42.920 journey and their path within their geography and their culture, 101 00:05:43.959 --> 00:05:47.959 and we try to provide access in knowledge education so 102 00:05:48.000 --> 00:05:50.800 that we can help them grow in their understanding of 103 00:05:50.920 --> 00:05:56.040 opportunities to be part of the care system. Lastly, we 104 00:05:56.160 --> 00:05:59.639 have a behavioral team that looks at all the behaviors 105 00:06:00.399 --> 00:06:02.439 because we know now behavior is a huge part of 106 00:06:02.480 --> 00:06:05.759 care right we whether it's some studies say fifty percent, 107 00:06:05.839 --> 00:06:07.879 some say seventy percent, at the end of the day, 108 00:06:08.279 --> 00:06:12.759 it's a large component of how people are effectively cared for. 109 00:06:13.120 --> 00:06:16.879 So understanding the behaviors in the real world that challenge 110 00:06:16.959 --> 00:06:20.519 good care and access, in understanding the behaviors that promote 111 00:06:20.519 --> 00:06:23.600 it are critical if we are going to deliver solutions. 112 00:06:24.079 --> 00:06:25.920 So those are the operational teams, and then we have 113 00:06:25.959 --> 00:06:28.879 a cultural team we could talk about separately that I 114 00:06:28.959 --> 00:06:33.600 believe is foundational in a patient centricity function, you need 115 00:06:33.639 --> 00:06:38.160 to create a culture of active patient centeredness and it's 116 00:06:38.199 --> 00:06:39.920 got to be more than a sign on a wall. 117 00:06:40.120 --> 00:06:43.399 And that's what sustains the operational piece. 118 00:06:44.480 --> 00:06:49.319 Everything you said, and it's not new right. You mentioned 119 00:06:49.319 --> 00:06:54.000 patient experiences, you mentioned patient priorities, preferences, needs, doing things 120 00:06:54.079 --> 00:06:58.399 that in drug development align with what's important to people. 121 00:06:58.959 --> 00:07:04.480 Understanding how people will engage in healthcare systems, engage with treatments, longitudinels, 122 00:07:04.480 --> 00:07:07.680 sustained engagement, to ensure that there is not only a 123 00:07:07.720 --> 00:07:11.600 culture of patient centricity, but also that there is a 124 00:07:12.639 --> 00:07:16.759 model that allows for everyone to learn and develop together. 125 00:07:17.600 --> 00:07:21.680 So no new words, I guess, but the way you've 126 00:07:21.680 --> 00:07:24.759 put it together perhaps is a little bit unique. How 127 00:07:25.879 --> 00:07:27.319 How did you do it? Who did you have to 128 00:07:27.360 --> 00:07:29.839 convince and how did you convince them? 129 00:07:31.120 --> 00:07:33.800 So you're right, I think this is sort of an 130 00:07:33.839 --> 00:07:38.480 intuitive concept. So if you look at other industries, there's 131 00:07:38.560 --> 00:07:41.199 not an industry in the world that doesn't engage the 132 00:07:41.240 --> 00:07:45.160 consumer before they mass produce the first product. Of course, 133 00:07:45.199 --> 00:07:48.319 they engage the customer and they look at ways to 134 00:07:48.480 --> 00:07:52.480 refine the product before it's produced. Yeah, farmer wasn't doing 135 00:07:52.560 --> 00:07:55.560 that fifteen years ago. These are words that we use 136 00:07:55.639 --> 00:07:58.800 now regularly, but fifteen years ago, when we were talking 137 00:07:58.800 --> 00:08:01.439 about this, it was not part of the dialogue. 138 00:08:02.079 --> 00:08:03.600 And so the first thing we. 139 00:08:03.639 --> 00:08:08.519 Had to do was convince people that better decisions can 140 00:08:08.600 --> 00:08:12.959 be made with this information. And the other difference between language, 141 00:08:13.120 --> 00:08:15.480 as you pointed out, that is being used over and 142 00:08:15.519 --> 00:08:19.759 over again and today, is that the language is associated 143 00:08:19.800 --> 00:08:23.399 with action. I think we talk about these things a lot, 144 00:08:23.519 --> 00:08:26.560 and we talk about engaging the patient and getting their inputs. 145 00:08:26.800 --> 00:08:30.439 But which is all great, it's all a necessary component 146 00:08:30.600 --> 00:08:33.639 of the future of what I consider to be the 147 00:08:34.320 --> 00:08:40.759 disruption in pharmaceutical and solution development. However, if you don't 148 00:08:40.840 --> 00:08:43.679 link it to action, we are not even close to 149 00:08:43.759 --> 00:08:48.879 completing the process. And so the difference in what exists 150 00:08:49.039 --> 00:08:53.000 today is that there's action associated with it is completely 151 00:08:53.080 --> 00:08:58.480 linked to somebody or some team creating an analysis for 152 00:08:58.840 --> 00:09:02.639 the traditional teams to react to and make better decisions. 153 00:09:03.159 --> 00:09:07.600 And so the convincing part was fifteen years ago when 154 00:09:07.639 --> 00:09:08.360 we brought it. 155 00:09:08.320 --> 00:09:09.840 To a research team. 156 00:09:10.240 --> 00:09:13.879 Their initial reaction was no way, absolutely not. Are we 157 00:09:13.960 --> 00:09:18.919 going to complicate an already complicated process with additional information 158 00:09:19.080 --> 00:09:21.559 from the customer who doesn't understand the science. 159 00:09:22.080 --> 00:09:24.399 And so we had to convince them through the. 160 00:09:24.480 --> 00:09:28.840 Example, you know that it doesn't prove their decision making, 161 00:09:28.879 --> 00:09:30.519 that the goals are completely aligned. 162 00:09:30.519 --> 00:09:33.559 So what it took was a lot of persuading. 163 00:09:33.600 --> 00:09:37.000 I knocked on a lot of doors of research teams, 164 00:09:37.080 --> 00:09:41.240 literally begging somebody to let me do an analysis for 165 00:09:41.360 --> 00:09:45.360 them so that they could just react to it. And 166 00:09:45.559 --> 00:09:49.799 finally a team did and they immediately saw the value 167 00:09:49.840 --> 00:09:52.039 in it that we were not trying to make their decisions, 168 00:09:52.080 --> 00:09:54.759 we were trying to make better decisions with them. 169 00:09:55.600 --> 00:09:58.360 And from there it just it literally took off. 170 00:09:58.399 --> 00:10:02.000 So my recommendation, as example, you have to have a 171 00:10:02.080 --> 00:10:06.240 valuable product, and if you have a valuable product, be persistent, 172 00:10:07.120 --> 00:10:11.559 create examples, and then let the customer be your evangelists. 173 00:10:11.960 --> 00:10:14.360 And that's what That's pretty much what we did across 174 00:10:14.360 --> 00:10:17.200 the research space. The development space and the delivery space. 175 00:10:17.240 --> 00:10:22.799 We continued to create examples that were valuable, improved decision making, 176 00:10:23.120 --> 00:10:29.600 improved deficiencies, and ultimately they became the best advertisement for 177 00:10:29.679 --> 00:10:30.200 the product. 178 00:10:31.720 --> 00:10:33.879 So tell me a bit more about those values. And 179 00:10:33.919 --> 00:10:37.480 you mentioned decision making, you mentioned deficiencies, but there was 180 00:10:37.559 --> 00:10:40.399 clearly something in there that the team saw and got 181 00:10:40.440 --> 00:10:44.200 excited about, something that they saw in return that provided 182 00:10:44.279 --> 00:10:49.600 some either streamlined approach or some direct feedback that allowed 183 00:10:49.639 --> 00:10:51.960 them to improve their program. What was it that you 184 00:10:52.159 --> 00:10:54.399 feel with those early indicators of value. 185 00:10:56.320 --> 00:10:58.759 I want to be clear for folks listening that are 186 00:10:58.799 --> 00:11:02.679 trying to build these things, I don't want to summarize 187 00:11:02.720 --> 00:11:04.879 it in a way that makes you feel as though 188 00:11:05.240 --> 00:11:08.519 it was easy and you're having a difficult time. And 189 00:11:08.600 --> 00:11:12.919 what I'm talking about in simple terms, are very complex processes. 190 00:11:13.799 --> 00:11:16.759 But what we did was. 191 00:11:16.759 --> 00:11:20.000 Basically look at the decision making processes. 192 00:11:20.200 --> 00:11:21.600 For instance, we use research. 193 00:11:22.200 --> 00:11:26.440 It's a very scientifically driven process. Does the molecule hit 194 00:11:26.480 --> 00:11:29.600 the receptor, how long does it stay, does it seem 195 00:11:29.639 --> 00:11:34.000 relevant in a particular disease area, And that's sort of 196 00:11:34.039 --> 00:11:39.240 how research progressed, right, and then it became a biostatistical 197 00:11:39.360 --> 00:11:43.559 argument when you get into clinical development, right, so you 198 00:11:43.600 --> 00:11:50.279 can see how this could proceed without the patient scientific validity, safety, 199 00:11:50.600 --> 00:11:54.720 p value right. So what we tried to do, and 200 00:11:54.799 --> 00:11:59.320 what we've done is convince them that the reason the 201 00:11:59.360 --> 00:12:02.919 research is successful and development is successful but the product 202 00:12:03.039 --> 00:12:06.440 isn't is because the patient was never consulted as to 203 00:12:06.440 --> 00:12:09.320 whether or not this is going to be impactful in 204 00:12:09.399 --> 00:12:14.399 their disease process. So our analyzes are very complex. They 205 00:12:14.440 --> 00:12:18.600 include the traditional pieces of information that research and development 206 00:12:18.639 --> 00:12:23.279 and delivery typically rely on, but it also includes very 207 00:12:23.320 --> 00:12:28.519 complex pieces of information that asks the question of will 208 00:12:28.519 --> 00:12:32.159 this have clinically meaningful benefit? What is the current standard 209 00:12:32.159 --> 00:12:34.399 of care, what are the gaps in care, what are 210 00:12:34.440 --> 00:12:37.559 the potential entry points, what can this molecule in this 211 00:12:37.720 --> 00:12:41.000 early phase, what do we believe it can achieve? What 212 00:12:41.080 --> 00:12:45.919 are the characteristics for success? And creating this very complex 213 00:12:46.000 --> 00:12:51.799 but detailed analysis gave researchers one a point of conversation. 214 00:12:52.000 --> 00:12:55.480 So we engage them very actively and go back and 215 00:12:55.519 --> 00:12:57.559 forth with the why and the what and the how 216 00:12:57.639 --> 00:13:03.559 and the rationale. But then we also allow them to 217 00:13:03.639 --> 00:13:08.639 reiterate and redesign their thinking, and then we stay with 218 00:13:08.679 --> 00:13:10.919 them and try to work through this. So the goal 219 00:13:11.000 --> 00:13:14.679 here is can you prioritize a research portfolio early on 220 00:13:14.799 --> 00:13:18.720 so you're not wasting resources and most importantly time, and 221 00:13:19.240 --> 00:13:22.600 can we align the molecule and the science with need 222 00:13:22.600 --> 00:13:25.399 and value in the right patient population. If you can 223 00:13:25.440 --> 00:13:30.000 do that inside of a company, everything that enters clinical 224 00:13:30.039 --> 00:13:34.279 development will have a basis from the customer perspective. Doesn't 225 00:13:34.279 --> 00:13:36.120 mean it's all going to succeed, but if it does, 226 00:13:36.399 --> 00:13:38.600 there should be customers on the other side waiting for 227 00:13:38.639 --> 00:13:42.759 it if you rationally approach this from a need value 228 00:13:42.759 --> 00:13:46.600 in science linked perspective. So that's one of the returns 229 00:13:47.000 --> 00:13:50.960 that companies can see very clearly. Hey, we've pared down 230 00:13:51.000 --> 00:13:54.080 our portfolio not just based on science, but based on 231 00:13:54.120 --> 00:13:56.799 the linkage of science, need and value. And now we 232 00:13:56.879 --> 00:13:59.120 know the things that are preceding and that we're investing 233 00:13:59.159 --> 00:14:02.399 in if we are successful, are going to have real 234 00:14:02.480 --> 00:14:03.679 value to the people waiting. 235 00:14:04.840 --> 00:14:06.639 Yeah. I think it's a really important point. I think 236 00:14:06.679 --> 00:14:09.039 all of us are a little bit guilty as people 237 00:14:09.039 --> 00:14:12.159 with scientific backgrounds of getting excited about the innovation, and 238 00:14:12.200 --> 00:14:15.080 we assume that that excitement will be shared. And sometimes 239 00:14:15.159 --> 00:14:19.639 it's not even scientific innovations. Sometimes it's this assumption that 240 00:14:19.679 --> 00:14:22.000 we place on the way that people may live their 241 00:14:22.000 --> 00:14:24.960 lives and the benefits they may perceive. My own career 242 00:14:25.000 --> 00:14:28.919 has been littered with examples. I worked on transplant programs 243 00:14:28.960 --> 00:14:33.200 where we assumed that people would would get very excited 244 00:14:33.240 --> 00:14:37.639 about transplants when they were living really tough lives and 245 00:14:37.759 --> 00:14:42.000 in need of in this case, puncreous transplants, and the 246 00:14:42.000 --> 00:14:45.600 immunosuppression versionment was so tough that people stopped taking it 247 00:14:45.639 --> 00:14:49.080 the transplants failed. I remember doing some work with new 248 00:14:49.200 --> 00:14:52.519 anticoagument therapy where there was a reducingly for INR monitoring 249 00:14:52.559 --> 00:14:55.200 and getting very excited about reducing the burden of people 250 00:14:55.240 --> 00:14:58.879 taking time off work, but the anxiety went up dramatically. 251 00:15:00.240 --> 00:15:04.000 Medication well the wonderful thing that is potentially available for 252 00:15:04.080 --> 00:15:06.200 people with at that point when I was doing a 253 00:15:06.200 --> 00:15:10.120 type two diabetes, Yet we found that people were forgetting 254 00:15:10.440 --> 00:15:13.240 they would So there was another reason for non adherents 255 00:15:13.279 --> 00:15:16.679 that we hadn't really accounted for. So understanding and incorporating 256 00:15:16.720 --> 00:15:19.320 that patient perspective I think is really important to do, as 257 00:15:19.320 --> 00:15:21.240 you say, in those early phases, so that we don't 258 00:15:21.240 --> 00:15:25.919 go down the path that is medically innovative, scientifically robust, 259 00:15:26.240 --> 00:15:30.639 but actually doesn't give opportunities for meeting those core needs 260 00:15:30.639 --> 00:15:32.879 of patients and healthcare professionals. 261 00:15:33.320 --> 00:15:36.360 Yeah, and what you just described, I mean is just 262 00:15:37.279 --> 00:15:41.639 perfection as an example, right, the things that seem so intuitive, 263 00:15:42.120 --> 00:15:45.240 and let's face it, right, And I say this all 264 00:15:45.240 --> 00:15:49.039 the time when I speak externally and when I speak 265 00:15:49.080 --> 00:15:53.919 to the teams in the company. Without science, there is 266 00:15:53.960 --> 00:15:56.320 no innovation, There is no new medicine. Right, So that 267 00:15:56.399 --> 00:15:58.840 the work that you did early on and the work 268 00:15:58.840 --> 00:16:03.240 that these scientists do is the foundation of the next 269 00:16:03.279 --> 00:16:07.320 generation of solutions. Right, it's just refining that energy and 270 00:16:07.399 --> 00:16:09.879 that intellect meaningful solutions. 271 00:16:10.159 --> 00:16:11.519 That is true. 272 00:16:11.759 --> 00:16:15.639 Patient centered thinking, right, the assumption that we know best. 273 00:16:15.879 --> 00:16:19.440 And I spent thirteen years in the exam room, at 274 00:16:19.440 --> 00:16:22.240 the bedside, in the hospital setting with patients when I 275 00:16:22.279 --> 00:16:27.919 was a practicing physician, and today I still learn every 276 00:16:27.960 --> 00:16:34.440 time we talk to patients because their situation is different 277 00:16:34.519 --> 00:16:40.360 based on geography, culture, belief system, age. You truly need 278 00:16:40.399 --> 00:16:44.799 to understand what is it we're trying to achieve and 279 00:16:44.960 --> 00:16:48.799 in who and where, and we need those patients to 280 00:16:48.879 --> 00:16:49.440 help us. 281 00:16:49.639 --> 00:16:51.639 There's no question you. 282 00:16:51.720 --> 00:16:54.759 Just bought something in that I think is really important 283 00:16:55.080 --> 00:16:59.240 because some approaches to generating an understanding of the patient 284 00:16:59.240 --> 00:17:02.840 perspective can rather a skinny approach, let's say, to doing 285 00:17:02.879 --> 00:17:07.559 that and haven't appreciated or understood some of the heterogeneity 286 00:17:07.599 --> 00:17:13.559 that exists within patient populations. Right you mentioned culture, age, geography. 287 00:17:13.680 --> 00:17:16.759 There are lots of variables that impact on the way 288 00:17:16.759 --> 00:17:20.559 that people feel, not only feel and function regarding their 289 00:17:20.599 --> 00:17:25.480 disease and perspectives on treatment, but also how they will 290 00:17:26.359 --> 00:17:30.319 report what's important to them and how they feel within 291 00:17:30.359 --> 00:17:33.880 the context of a clinical trial. To that end, because 292 00:17:33.920 --> 00:17:36.759 when we were collecting these essays for that patient centricity 293 00:17:36.759 --> 00:17:39.960 book I mentioned, we had essays from patient advocacy organizations 294 00:17:40.000 --> 00:17:43.920 as well as people from within the industry like you, Anthony, 295 00:17:43.960 --> 00:17:48.240 and what we heard was a real need to increase 296 00:17:48.279 --> 00:17:52.160 the generalizability of our understanding. And I do think it's 297 00:17:52.200 --> 00:17:55.680 important for us to recognize that hearing from a small 298 00:17:55.680 --> 00:17:58.640 group of people may not allow us to fully appreciate 299 00:17:58.720 --> 00:18:02.920 or understand some of the complexities that exist in living 300 00:18:02.960 --> 00:18:07.480 with disease or considering managing that disease. You've obviously done 301 00:18:07.519 --> 00:18:10.839 a lot of work with patient organizations as well as 302 00:18:10.880 --> 00:18:14.599 individual patients and you talked about the term on investment 303 00:18:14.839 --> 00:18:19.720 or a stellus and pharmo in these engagements, But what 304 00:18:19.839 --> 00:18:23.400 about the other side, How are those guys benefiting from 305 00:18:23.480 --> 00:18:24.720 the kind of work that you're doing. 306 00:18:26.160 --> 00:18:28.000 So first I want to congratulate you on the book. 307 00:18:28.039 --> 00:18:28.920 The book is just. 308 00:18:28.960 --> 00:18:33.279 A terrific effort on your part in a QVA to 309 00:18:33.319 --> 00:18:37.559 create a series of thoughts, if you will, from people 310 00:18:37.839 --> 00:18:41.799 doing the work. Just just an amazing effort. So congratulations 311 00:18:41.799 --> 00:18:43.880 on that. I was very humbled to be part of it. 312 00:18:44.119 --> 00:18:47.839 So I'm going to take a position here that may 313 00:18:47.839 --> 00:18:51.759 be a little bit controversial, and that is that on 314 00:18:51.799 --> 00:18:57.759 the opposite side, people become paralyzed in industry because of 315 00:18:57.799 --> 00:19:01.480 that worry. Am I getting enough input? Am I doing 316 00:19:01.640 --> 00:19:04.599 enough to get a generalized population? And what happens as 317 00:19:04.599 --> 00:19:07.119 a result of this paralysis. 318 00:19:06.400 --> 00:19:08.160 Is nothing moves forward. 319 00:19:08.720 --> 00:19:10.240 My argument is do what. 320 00:19:10.160 --> 00:19:10.640 You can do. 321 00:19:11.119 --> 00:19:14.960 Talking to patients in any geography and outside of any culture, 322 00:19:14.960 --> 00:19:16.480 in any age group is better than not. 323 00:19:16.720 --> 00:19:17.680 Talking to them. 324 00:19:17.759 --> 00:19:22.000 And connecting it to action is the most critical piece. 325 00:19:22.319 --> 00:19:26.160 So when we engage patients, I tell my teams all 326 00:19:26.200 --> 00:19:28.920 the time it is not a one and done. Get 327 00:19:28.960 --> 00:19:31.559 all the information you can from this population. When we're 328 00:19:31.599 --> 00:19:36.799 working with researchers, it is a longitudinal engagement activity that 329 00:19:37.359 --> 00:19:41.640 parallels the research, development and delivery process. So we're engaging 330 00:19:42.119 --> 00:19:47.920 and analyzing and reporting, and engaging and analyzing and reporting 331 00:19:48.599 --> 00:19:52.920 multiple times through the life cycle of a molecule's development. 332 00:19:54.200 --> 00:19:58.200 Do what you can do in reasonable ways to get 333 00:19:58.240 --> 00:20:02.440 as much information as possible in multiple formats, by interviewing 334 00:20:02.440 --> 00:20:06.319 group patients, by interviewing in different geographies, by interviewing. 335 00:20:05.960 --> 00:20:08.039 Patient in engaging patient. 336 00:20:07.720 --> 00:20:10.720 Groups, by looking at literature, and some diseases they're well, 337 00:20:10.920 --> 00:20:13.400 very well defined already where there's been a lot of 338 00:20:13.440 --> 00:20:17.640 engagement activity. Use everything you can use, and now with technology, 339 00:20:17.680 --> 00:20:22.119 there's ways to expand that understanding. But do what you 340 00:20:22.160 --> 00:20:27.319 can do, be relevant, be engaged, be actionable, and that 341 00:20:27.519 --> 00:20:34.240 is the beginning of a truly functional patient centricity activity. 342 00:20:35.119 --> 00:20:38.160 Tell me, then, how we can think about this benefit 343 00:20:38.519 --> 00:20:41.839 for multiple groups. We've talked about spending a number of 344 00:20:41.880 --> 00:20:44.279 years in routine clinical care at the bedside before coming 345 00:20:44.279 --> 00:20:46.720 into FARMA, but we talked a little bit about the 346 00:20:46.799 --> 00:20:51.400 engagement of advocacy organizations and other groups. The return on 347 00:20:52.039 --> 00:20:55.119 engagement for Estellus is something that you've spent a chunk 348 00:20:55.160 --> 00:20:59.640 of time thinking about and defining and showing what about 349 00:20:59.680 --> 00:21:04.240 the other group? So what how how do you encourage 350 00:21:05.000 --> 00:21:09.200 either patient advocacy organizations or medical charities or other groups 351 00:21:09.240 --> 00:21:13.440 of people to engage in research with the industry, and 352 00:21:13.480 --> 00:21:18.000 how does that engagement benefit both them and the clinical 353 00:21:18.039 --> 00:21:21.920 decision making Contexte. 354 00:21:22.039 --> 00:21:24.319 I made a promise when I started at Estellas in 355 00:21:24.359 --> 00:21:27.559 twenty nineteen. I made a commitment that any patient group 356 00:21:27.599 --> 00:21:31.720 that works with us out of Styllist, I guarantee you 357 00:21:31.720 --> 00:21:34.839 you're not wasting your time. The information that you gave 358 00:21:34.920 --> 00:21:37.960 us will be made actionable and will be integrated into 359 00:21:38.039 --> 00:21:39.880 the work that we do. Doesn't mean we're going to 360 00:21:39.920 --> 00:21:43.079 be successful, but you will not have wasted your time. 361 00:21:43.119 --> 00:21:45.519 And that's one of the biggest complaints of the patient groups. 362 00:21:45.599 --> 00:21:49.480 I've told my story one hundred times and nothing ever 363 00:21:49.559 --> 00:21:52.640 comes of it. Nobody ever gives back any more information 364 00:21:52.680 --> 00:21:54.759 as to how it was used. Well, we stop that, 365 00:21:54.839 --> 00:21:56.680 and in fact, in the books I end one of 366 00:21:56.680 --> 00:22:00.319 the chapters with a letter to patients that we should 367 00:22:00.319 --> 00:22:03.279 be able to write if we fully engage in the 368 00:22:03.440 --> 00:22:07.720 right format and the right patient centricity process, saying to 369 00:22:07.799 --> 00:22:11.480 them today's different you are going to be able to 370 00:22:11.720 --> 00:22:15.000 proudly go to bed and know that your information helped 371 00:22:15.079 --> 00:22:16.079 us create a solution. 372 00:22:16.559 --> 00:22:19.279 So where's the alignment, where's their incentive? 373 00:22:19.319 --> 00:22:23.319 Is that if you're truly authentic and you absolutely use 374 00:22:23.400 --> 00:22:28.000 the information effectively, that trust becomes as hard as steel, 375 00:22:28.359 --> 00:22:32.200 you know, it becomes this sort of Okay, I understand 376 00:22:32.240 --> 00:22:35.759 that you can't guarantee me a product or a solution, 377 00:22:36.440 --> 00:22:38.599 but I know that my time is well spent with you, 378 00:22:39.039 --> 00:22:42.079 and that's the authenticity of what we need to make 379 00:22:42.160 --> 00:22:44.319 sure we present in a. 380 00:22:44.319 --> 00:22:46.680 Real way to patients in patient groups. 381 00:22:46.519 --> 00:22:52.000 That is connected, that is truly actionable. That's what they want, right. 382 00:22:52.720 --> 00:22:56.160 You can't take every shot on goal doesn't land. But 383 00:22:56.640 --> 00:23:01.200 if you're making the best effort possible utilizing the information 384 00:23:01.319 --> 00:23:04.119 in real ways, nothing more can be promised. And that's 385 00:23:04.119 --> 00:23:06.039 what we promise the patient group. So what is in 386 00:23:06.079 --> 00:23:09.720 it for them? It's an authentic, real. 387 00:23:09.519 --> 00:23:12.440 Effort to gather to develop a solution. 388 00:23:12.839 --> 00:23:15.519 It is not we're going to take your information, describe 389 00:23:15.559 --> 00:23:18.319 it and never use it. You're wasting your time. Instead, 390 00:23:18.400 --> 00:23:21.960 it's you're part of this. We're using your information, and 391 00:23:22.000 --> 00:23:23.359 we'll come back to you and let you know how 392 00:23:23.400 --> 00:23:26.480 we've used it. That's the difference, and I think it's real, 393 00:23:27.079 --> 00:23:32.200 it's important, it's measurable, and it's respectful to the patients 394 00:23:32.200 --> 00:23:32.880 we're working with. 395 00:23:33.400 --> 00:23:36.200 That's really encouraging to hear because in all of the 396 00:23:36.279 --> 00:23:39.359 engagement situations we have with patients, there are two words 397 00:23:39.359 --> 00:23:41.720 that come up frequently and you mentioned them both, and 398 00:23:41.759 --> 00:23:46.480 that's authenticity and trust. And trust in particular is something 399 00:23:46.519 --> 00:23:50.240 we hear a lot about people wanting to ensure that 400 00:23:50.559 --> 00:23:55.440 they're offering their time, their experience, demonstrating a degree of 401 00:23:55.559 --> 00:23:57.960