Episode Transcript
[00:00:03] Speaker A: Welcome to Power to the Patients, a LinkedIn Live and podcast series hosted by Power, where clinical research leaders across sponsors sites, cros, and patient advocacy groups discuss patient centricity in clinical trials. We explore the bottlenecks in today's system, challenge the status quo, and talk about future opportunities for innovation. Let's dive in.
[00:00:31] Speaker B: Hello. Hello. We are joined here today by very special guest Vicki DiViasso. Vicki is vice president at Sonovi and the global lead for patient informed development. Really excited to be having this conversation with you. Vicki, could you give us a little bit of a background, your career, your journey, how you ended up where you are today.
[00:00:49] Speaker C: Yeah, thanks.
[00:00:49] Speaker D: First and foremost, thanks for having me. It's great to be here. So, I am a nurse by training, and I had the great fortune of starting my career very early in my nursing career, getting into clinical trials. So I've been a research nurse and a study coordinator. And I have to say, I think that was probably the most rewarding and almost accidental part of my career that's ever happened. It gave me the gift of understanding the hope that a clinical trial can bring to individuals and their families. And then I had the honor and the privilege to come into industry after spending a couple of years doing clinical.
[00:01:26] Speaker C: Trials with patients and their families. I'm also an advocate.
[00:01:30] Speaker D: I've done a lot of work in the Parkinson's community. My family has been affected by that and very passionate about finding ways to accelerate clinical trials because I fundamentally believe on all levels that the cures, I mean, it's the truth, too, the cures and the treatments that are really going to improve people's lives. Notably in the Parkinson's community, we haven't.
[00:01:54] Speaker C: Had an advancement in, gosh, I forget.
[00:01:57] Speaker D: It'S either 60 or 80 years, but it's been beyond my lifespan, I'll put it this way. And there's still no treatment. And if it wasn't for clinical trials, we wouldn't have that hope on the radar. So that's just a quick overview of me. And you're right, I get the honor and privilege every day of working with a talented group of people across all of our development programs and indications at Sanopi, where we are gladly and vigorously integrating the patient's experience into all of our decision making.
[00:02:24] Speaker B: And for those less familiar, what is patient informed development? What the heck is this?
[00:02:31] Speaker D: Well, the long term, it's patient informed development and health value translation. So at SanofI, we are integrating the patient experience, the patient voice, their need, their preferences, basically the comprehensive patient experience into the decision making, and how we even move programs from preclinical and make.
[00:02:53] Speaker C: The decisions to come into development, and then shaping that entire development strategy to.
[00:02:58] Speaker D: Include the patient considerations.
So, yeah, it is, I think, Just what it kind of Sounds like.
[00:03:06] Speaker B: And how long has that Been a central part of how Sonofi has been thinking about the Clinical trial Process?
[00:03:12] Speaker D: Yeah, quite a long time. So I've had the Privilege of integrating the patient perspective into our development programs since 2010. So it has been over a decade, and I think we're one of the few pharma companies, and I think the only large pharma, that actually integrates patient perspective in 100% of our programs, 100% of our indications in every single clinical.
[00:03:37] Speaker C: Trial that we do.
[00:03:38] Speaker B: Wow, I'm dying to ask. The name of the podcast is power to the patients, and it's all about patient centricity. I know that's a huge topic over at Sonofi. What does patient centricity mean to you?
[00:03:48] Speaker D: That's a really good question, and it's interesting that you raise it, because when we started, so we had a restructure a couple of years ago, when the new team was formed, we actually sat down and we defined it, because what we found is that everybody tended to define what patient centricity was a little bit differently, of course, and that really could impact how they address their jobs and the scope and just the way you go about making sure that the patient perspective has been actioned. So we sat down and we came up with a common definition that spans all of research and development. And so for us, it really is the commitment to listen and translate patient insights into actions that develop new healthcare solutions with meaningful outcomes, that address unmet medical needs and improve health related quality of life.
[00:04:38] Speaker B: Take me on a bit of a journey. What were the competing definitions that had to get swatted away?
[00:04:43] Speaker D: We didn't have any competing ones. We really were starting from just a myriad of different perspectives.
[00:04:49] Speaker C: And so when we think about the.
[00:04:51] Speaker D: Health value translation component, which is not just looking at the patient experience and applying it to more of the clinical operations, it's really pulling through that health value component. And that's why we think about listening and then translating into actions for meaningful outcomes that really do impact positively health related quality of life. And so the health value translation part.
[00:05:14] Speaker C: I think, was more of, I think.
[00:05:16] Speaker D: The awareness that when we really engage with individuals living with that disease, when you engage with their caregivers, you begin to understand the more holistic experience people have in their healthcare journeys and those interactions they have even just trying to a determine what is the right medication to take, what is the trade off that they're willing to accept. If there is, maybe it's an infusion versus an oral pill versus there might be a side effect profile. And building all of that into the strategy so that we're really bringing forward.
[00:05:51] Speaker C: A medicine that meets what they're looking.
[00:05:54] Speaker D: For and addresses what they're really striving to achieve when it comes to a.
[00:05:59] Speaker C: Positive health care journey.
[00:06:01] Speaker B: Maybe another way to look at this is where do you think people go wrong in this journey? Because what you've said is quite aspirational. I think it's hard to argue with. So what are the stumbling blocks along the way here?
[00:06:13] Speaker D: There's a lot of ambiguity in the industry right now around consistency. So I think when I look across the industry, where we have an opportunity collectively, is to begin to implement this consistently. When that happens, then the ecosystems, I think, begin to understand the value of the patient experience, even what to do when you hear an insight. And so that body of knowledge, I think, can begin to grow a little bit faster if we're all in on this type of a model where all milestones and all of the different phases and considerations within a research and a development program are really from the perspective of the patient as a consumer of health, and also taking into consideration their caregivers, because often there is a shared decision making that goes on, and then how does that apply into the clinical trials? I think there's just one other thing.
[00:07:06] Speaker C: That I would mention is if we're.
[00:07:08] Speaker D: All really collectively working more consistently, then you will begin to see a transformation and an acceleration of how clinical trials can be conducted. Even when it comes to how do we collaborate with advocates and the patient communities in general, there's a lot of variation in how that's done today. We just recently initiated a, it's us focused, but a cross industry, cross advocacy disease agnostic consortium called Paladin. And we're focusing on how do we create common standards, on how we interact.
[00:07:45] Speaker C: As industry and advocacy partners to make sure that we're really moving quickly and.
[00:07:51] Speaker D: We'Re informing each other on what works best and what's most effective, so that we don't expend resources on perhaps programs that might be less impactful and we really begin to focus in on shared learnings and knowledge.
[00:08:04] Speaker B: I'm so curious about this idea of cross industry collaboration because it's hard to kind of coordinate that across all these institutions. What has that been like?
[00:08:13] Speaker D: It's actually been really invigorating so Paladin started in January, and when we brought the concept, we first brought the concept to advocates, and it was myself and my team. We had seen a lot of variation in terms of understanding of how to work together. So we brought it to a group of over 100 advocates and asked their advice. Did they feel that there was an opportunity for us to kind of consolidate and standardize our ways of working and how we begin to build these bodies of knowledge so that we really focus.
[00:08:47] Speaker C: On what matters most?
[00:08:49] Speaker D: And it was a resounding yes. When I spoke to other members within the industry, other leaders, there was also.
[00:08:55] Speaker C: Quite frequently, I would say, with the.
[00:08:58] Speaker D: Exception of maybe one or two, there was like, yes, how do we get involved? Now we have almost 30 organizations that are part of Paladin, and we'll have our first outcome reported in October.
[00:09:10] Speaker C: Wow.
[00:09:10] Speaker B: That's so exciting. Congratulations.
[00:09:14] Speaker D: The only thing I'd say the biggest challenge is refining all the things that we want to tackle, because when we started looking at the opportunities, it felt like, oh, we could really try to boil the ocean here, but we have to come forward with some key deliverables and then begin to build out systematically.
[00:09:30] Speaker C: So I think just having more opportunities.
[00:09:32] Speaker B: To do a lot, can you foreshadow what some of those initial milestones are that you're trying to hit?
[00:09:40] Speaker D: Yeah. So we have four main work streams within Paladin right now. So we have common standards and foundations. So, again, ways of working for a lot of pharma companies and for some advocacy organizations as well. Just getting to start. How do we even start with a contract? What would a contract need to have? Those types of considerations are what's just part of that. And so we're coming for which these will all be publicly available for individual groups to use.
They're pre promotional, non promotional, just templates. As an example.
[00:10:16] Speaker C: We have other training.
[00:10:17] Speaker D: So if individual organizations are looking to embark on kind of a patient informed and health value translation or other interactions.
[00:10:26] Speaker C: To help support research and development, then.
[00:10:29] Speaker D: There'S also some training. We're looking at effective ways to promote trial participation and to improve that. So something probably very near and dear to your heart is how do we talk about clinical trials? We know that pharma companies and we know that advocates spend a lot of time and resources developing patient support materials for each study. But what if we had common materials that people could just go in, pull down, that several of us have looked at and said, you know what? We think part of this, and part of this makes up the ideal explanation of what is a clinical trial? Why is it important to participate? Why is diversity important?
[00:11:05] Speaker C: So that would be one of them.
[00:11:07] Speaker D: How do we communicate most effectively with patient communities and learning from each other as to what has worked well so that there's a body of knowledge, like I said previously, that really focuses on what's important within that. We're also looking at how do we develop framework for diversity and inclusion initiatives that are meaningful, that they're sustainable and that they're actually impactful and they have.
[00:11:31] Speaker C: The outcomes that are intended and we.
[00:11:33] Speaker D: See an improvement and inclusion in the diversity of research participation. And then obviously there's the fourth, obviously.
[00:11:40] Speaker C: If I should say the fourth work.
[00:11:42] Speaker D: Is working on solutions at work and again, just increasing body of knowledge and then we're trying to refine, where do we go next year? Because again, so many opportunities.
[00:11:51] Speaker C: It's quite exciting.
[00:11:52] Speaker B: Yeah, absolutely. One more question along this path and we'll get back to the kind of core of what we wanted to talk about. But diversity is such an important topic today. What is the new voice that you're trying to bring here to this discussion, the new voice?
[00:12:07] Speaker D: Well, I don't know if it's a new voice. I mean, it's certainly a topic that I'm glad to see be a priority not only within industry, but within regulators and for advocates as well. What we're trying to bring forward is the voice of those who have traditionally not had a voice or traditionally not been heard. And I think that's something that we are spending a lot of time within Sanofi and the patient form development Health Value Translation Department is understanding what are some of the social determinants of health? What are some of the barriers that people have had in accessing health care.
[00:12:47] Speaker C: When we talk about trust, where has.
[00:12:49] Speaker D: The trust broken down and why? So that we can bring that forward to advocate on their behalf and be inclusive by design. So what we're trying to do in real time, and it's with diverse patient advisors, is to begin to understand their perspectives more so that we are proactive in our approach, that we're sincere in our approach, and that they're heard.
[00:13:09] Speaker B: Yeah, that makes sense. So clearly, patient centricity, hearing patients, listening to patients core to what you do, you lead that at Sanofi. How do you think about the impact of patient centricity? It feels like maybe like a less quantifiable domain. So how do you justify your job, Vicki?
[00:13:29] Speaker D: Well, you're right.
[00:13:31] Speaker C: One of the things that we have.
[00:13:32] Speaker D: Noticed in the industry is that we don't have a lot of published data on some of the value and impact frameworks we have been trying this year. And certainly we were at several conferences speaking about how do you demonstrate the value of this? Obviously, there's kind of what I would call quick wins. So if we are doing right by individuals in how we create our clinical development plans, our clinical trials, we're making it easier for people to participate. We're making the eligibility more representative.
There is a timeline associated with that. Obviously, we're looking at impact that benefits.
[00:14:12] Speaker C: Not just us as a company, but.
[00:14:15] Speaker D: Benefit that impacts the patient, the caregiver, the healthcare systems. And so we've really started to break out now a strong suite of metrics and KPIs.
I just mentioned timelines, well within timelines, the ROI there, the return on that investment is if I'm an individual waiting.
[00:14:35] Speaker C: For a, a treatment, if one is.
[00:14:38] Speaker D: Not there, or an improved treatment. And we think that our program and our product could potentially be that accelerating, that has huge value for individuals who are waiting. Some people don't have the luxury of time. If we think about from the industry perspective that time, we're able to move our programs through quickly, redeploy resources on other studies, and obviously there's a cost savings. And when we have a cost savings, we redeploy that back into research and development to create more products for individuals. We can also look at the patient relevant endpoints and outcomes, and this is part of that health value translation component. Understanding what kind of a treatment an individual is looking for allows us then to look at our clinical outcomes assessments, look at our endpoints and outcomes that.
[00:15:23] Speaker C: Really speak to what matters to individuals.
[00:15:25] Speaker D: It's very easy traditionally to look at clinical outcomes, but understanding if a clinical outcome really matters to an individual is a different topic.
[00:15:34] Speaker C: Let me give you an example of that.
[00:15:36] Speaker D: There's a lot of health scales that physicians will use to measure progress of a disease. Do those scales mean anything to anybody? Or is what matters to an individual? It's like, okay, you show me my score, it's changed. But reality is I still have pain.
[00:15:54] Speaker C: In my hands and I still have.
[00:15:55] Speaker D: A hard time carrying out daily activities of living. The pain is what matters.
[00:16:00] Speaker C: So if we build in endpoints and.
[00:16:02] Speaker D: Outcomes that measure the pain and then have label opportunities, because that strategy would have to start early. If our label opportunities reported and reflected that by the time it became available.
[00:16:13] Speaker C: To market, then the benefit to an individual is okay, I will or will.
[00:16:19] Speaker D: Not know if this is what I'm looking for. Their healthcare provider will be able to articulate that. And for us, we've built a medication that's actually what people are looking for.
[00:16:28] Speaker C: And so that's a few of how.
[00:16:32] Speaker D: We are actually talking about the benefit, the return on the investment, and the.
[00:16:37] Speaker C: Impact that patient informed development with a health value translation component has to drug development.
[00:16:43] Speaker B: Yeah. So it all starts quite upstream in how you're thinking about what is the end state kind of impact that you can even claim about some of these programs and how does that fit into a patient's life?
[00:16:56] Speaker C: Yeah, well, it's exactly that.
[00:16:59] Speaker D: If we develop a medication and we are unable to answer that, then we will not have been successful. But the end state is saying we've developed a medication a the science works.
[00:17:09] Speaker C: Which is great, but also people are.
[00:17:12] Speaker D: Able to make a very informed decision about the healthcare product that works for them.
[00:17:17] Speaker C: And if it's ours, the data are.
[00:17:20] Speaker D: There for them proactively. That should also help improve market access. Right. So if we can really show differentiated improvement and reduction in burden for the individual, for health care, and an improvement in health related quality of life, going back to our definition, then that's beneficial for all. And then if we look at our.
[00:17:39] Speaker C: Clinical development, our clinical trials, we've made.
[00:17:43] Speaker D: It easier for people to connect to the research because we understand where they're seeking information, we understand the type of information they need.
[00:17:49] Speaker C: We're also reducing the burden, making it.
[00:17:52] Speaker D: Easier for everybody to be a participant. And that may come from a reduction in the number of procedures. Right now. And we go back to your metrics question earlier. We see, on average, three procedures per.
[00:18:04] Speaker C: Protocol that are reduced every time our.
[00:18:07] Speaker D: Patient advisors help us design a study.
[00:18:10] Speaker C: From draft to final.
[00:18:11] Speaker D: The eligibility becomes more inclusive, our diversity becomes truly representative.
All of those things, for us, they're all equally as important. But those are just some examples of.
[00:18:25] Speaker C: That end product look like.
[00:18:27] Speaker B: Yeah, I want to zoom in a little bit here on the clinical trial side, one thing that you said that's quite interesting to me is how do you talk about your clinical trials in the language that patients want to hear? Because it does improve access, it does improve interest, it helps patients understand really maybe the merits of the research. How are you thinking about that?
[00:18:47] Speaker C: Well, we ask them, like I said.
[00:18:49] Speaker D: Every single clinical trial that we have is informed by a diverse set of patient advisors or their caregivers. And it's not just us coming from.
[00:18:58] Speaker C: US patient advisory work.
[00:19:00] Speaker D: We're in over 30 countries right now, working with almost 200 advocacy organizations in their communities to elicit this feedback. So we do talk to them about what is it that you need to know?
[00:19:12] Speaker C: How do we make it clearer?
[00:19:14] Speaker D: We do take our materials and ask for advice. Is it too technical? Then we will make it more lay language. We also think about different societal ways of how we'd want to talk about research as well. And then obviously sometimes the families, they also want to have supplemental information about impact. So it really starts with, I would.
[00:19:37] Speaker C: Say, asking individuals what you need to.
[00:19:41] Speaker D: Know and where are you getting your information.
[00:19:43] Speaker C: Yeah.
[00:19:44] Speaker B: And what else is important in terms of implementing some of these patient centric solutions in your clinical trial programs?
[00:19:52] Speaker D: Starting early. It has to be early.
[00:19:54] Speaker C: Okay.
[00:19:54] Speaker D: And it has to be consistent in terms of the approach. If you start late, you won't have time. Because if we really begin to build on patient experience, as an example, if we are listening prior to even starting a development program, we're able to do really in depth work around what are those meaningful endpoints and outcomes. There may be times, and we have many examples, where there have not been tools to properly measure what patients feel are most important.
[00:20:28] Speaker C: So if we do have to go.
[00:20:29] Speaker D: Out and develop a novel patient reported outcome measure, we have time to do.
[00:20:33] Speaker C: That, work with the regulators, make sure.
[00:20:36] Speaker D: That they agree, have it validated, and then ready for our pivotal clinical trial.
[00:20:41] Speaker C: But that takes years. So having a consistent, thorough and early.
[00:20:47] Speaker D: Engagement plan is essential. And we start, like I said, we.
[00:20:51] Speaker C: Start in the research space and that.
[00:20:54] Speaker D: Information forms for every indication what we call the patient disease strategy. And that framework is comprehensive and it's end to end, and it's also one that's continuously informed and we build upon knowledge that we gain over time.
[00:21:09] Speaker B: We spoke earlier about standardization and industry collaboration, but some of the stuff around patient disease strategy and the way that you want to think about going to market with some of your products feels quite proprietary. How do you think about what is shareable, what is standardizable, versus what's kind of like your secret sauce?
[00:21:25] Speaker C: So how we go about doing it.
[00:21:27] Speaker D: In my opinion, is not proprietary.
[00:21:30] Speaker B: Okay.
[00:21:30] Speaker D: And that's one of the reasons that we've been putting more into the public domain, whether it's through articles, publications, conferences. We've put our patient disease strategy, that framework has been published, that is there for others to leverage if they wish. How we even measure impact and value. That has been publicly shared as well.
[00:21:55] Speaker C: To me, that's not proprietary.
[00:21:57] Speaker D: Proprietary comes within the science. But how you do good clinical research that's really intended for the benefit of society, that's something we should be doing more sharing of. And I would even advocate that we need to do more sharing around what hasn't been working.
[00:22:11] Speaker C: And that's for palate in the consortium.
[00:22:14] Speaker D: That we've started with industry and advocacy. One of the work streams that we want to bring forward in some of the information within them over time is.
[00:22:23] Speaker C: Case studies on where we probably should.
[00:22:26] Speaker D: Focus last, because it isn't as impactful. And if we all begin to share that body of knowledge, then collectively what one company is doing, if it benefits another company by bringing a medicine that.
[00:22:36] Speaker C: Could benefit an individual, brings it faster.
[00:22:40] Speaker D: Then we've done right by society.
[00:22:42] Speaker B: Yeah, I feel like there's this whole discourse in the scientific community about not publishing failures enough, and as a result, a lot of people kind of going through the same motions that somebody else has already discovered is a dead end.
[00:22:55] Speaker C: Right. We really should stop.
[00:22:58] Speaker D: Really should stop. And we should be publishing more of what hasn't worked. And obviously, I'm speaking from our framework and everything else, but absolutely. I mean, failures are just as important.
[00:23:10] Speaker C: As they're probably equally important, I guess, to understand so that we don't repeat those less impactful approaches.
[00:23:18] Speaker B: Certainly, as the last chapter, this discussion, I'd love to talk about the future. What does the future of patient centric clinical trials look like to you?
[00:23:27] Speaker D: Well, I'd like to see the future be more consistent.
[00:23:30] Speaker C: I'd like every pharma company be all.
[00:23:34] Speaker D: In for 100% of programs, 100% of indications, and all of their clinical trials, and share that knowledge so that we can build on insights. The more time that I have to.
[00:23:45] Speaker C: Spend, my team have to spend on.
[00:23:47] Speaker D: Understanding patient experience and insights and then.
[00:23:50] Speaker C: Another company repeat it, I would love.
[00:23:54] Speaker D: To see a shared resource around that. That would be great. I definitely think the use of artificial intelligence is going to be transformative on multiple levels.
[00:24:04] Speaker C: And I think if we think about.
[00:24:05] Speaker D: Transforming the pace of medicine's development, the number one thing that we can do.
[00:24:10] Speaker C: Is to speed recruitment.
[00:24:12] Speaker D: If we can begin to use artificial.
[00:24:13] Speaker C: Intelligence more to help identify patients that.
[00:24:18] Speaker D: Would be eligible for a clinical study, I think that would be hugely helpful. It would also benefit physicians bringing for clinical trials as a front and first line care option. I still think that clinical trials are, unfortunately an afterthought, though. I would like to see the future of clinical trials also include clinical trials as the first thing we think about. Because fundamentally, if you think about it, we're trying to develop medicines that are.
[00:24:44] Speaker C: Better than what's on the market today. Right, or medicines where we don't have.
[00:24:49] Speaker D: Any options on the market today. So the first person who's going to.
[00:24:53] Speaker C: Be cured, or the first person who's.
[00:24:55] Speaker D: Going to receive a better, more holistic treatment for what they're looking for is somebody who's been in a clinical trial. And so I think artificial intelligence can.
[00:25:01] Speaker C: Help make that easier for folks.
[00:25:04] Speaker D: And then clearly having more representative clinical studies.
[00:25:08] Speaker B: We think a lot about patient recruitment today.
What does modern patient recruitment mean to you?
[00:25:16] Speaker C: More holistic.
[00:25:16] Speaker B: Holistic.
[00:25:17] Speaker D: And I think it goes back to being purely and truly, deeply patient informed in the approach. So if we think about the patient experience, that will inform clinical outcomes, that will inform the endpoints, that will hopefully make the clinical trials more relevant for somebody. As they begin to think about why would they participate, the study designs become more inclusive by design. So eligibility. We're not making accidental mistakes that may disproportionately exclude individuals because we've really understood, perhaps it's a comorbidity that may be more prevalent in a specific race or gender or with age. Making sure that we don't have those as exclusionary criteria will help that as well.
[00:26:02] Speaker C: When we think about the burden, how.
[00:26:04] Speaker D: Do we work with patients to reduce the burden? How do we bring it to them? How do we identify the right technology for them and for trial sites? Because we can't overburden them either, with all those tech options that'll slow them down. So it's really, I think, becoming holistic. And then, obviously, how do we speak to individuals? Where are they consuming informational clinical trials? Where is that information most trustworthy, worthy.
[00:26:29] Speaker C: To them so that they would make.
[00:26:31] Speaker D: A decision to participate, and then connecting that all the way through to benefit risk assessments. Like I said, label opportunities. In the end, it's that reason to believe.
[00:26:40] Speaker B: Yeah, absolutely. My kind of traditional closing question here is the magic wand question. So, Vicki, you have a magic wand, and you can change anything about how clinical trials are done today? What is changing overnight?
[00:26:52] Speaker D: I had one magic wand to change anything.
[00:26:54] Speaker C: I would like to see clinical trials.
[00:26:58] Speaker D: Become the first consideration for anybody when.
[00:27:01] Speaker C: You need something from your healthcare. And it could be a clinical trial.
[00:27:06] Speaker D: It could be a registry, I mean, just involvement in research. I think if I had one thing.
[00:27:11] Speaker C: That if every one of us, notably.
[00:27:13] Speaker D: Those of us who are advocates and those of us who are part of other patient communities or caregivers, if every single one of us did one thing that supported research, clinical trial, registry, observational.
[00:27:25] Speaker C: Study, we would absolutely transform how fast.
[00:27:29] Speaker D: These medicines were brought forward, and the speed and the pace of scientific knowledge would grow at an exponential rate. So that would be my one wish.
[00:27:38] Speaker B: That's a powerful one thing I got to ask. Okay, what's stopping that from being the case today then?
[00:27:44] Speaker C: I don't know.
[00:27:45] Speaker D: I'm in a registry. I just did my 32nd virtual visit. I've done a clinical, clinical trial. I've been in three research studies, including one that was a spinal tap lumbar puncture for biomarker, which contributed to helping finding the biomarker for Parkinson's disease. Because the PPMI study, which is a.
[00:28:06] Speaker C: Groundbreaking study that the Michael J.
[00:28:08] Speaker D: Fox foundation did, there were several studies collecting samples from healthy volunteers as well.
[00:28:14] Speaker C: As people with Parkinson's.
[00:28:15] Speaker D: I never thought that it would have that kind of impact, but knowing that I've contributed, it makes you feel phenomenal. I mean, just be able to give back.
[00:28:22] Speaker C: But I think people just have to be conscious of it. Find a way to even identify what.
[00:28:28] Speaker D: Type of study they might be open to is essential. And I think that's another big gap that we have. If we could have one source of truth where people could easily identify their.
[00:28:38] Speaker C: Options, then that, I think may help.
[00:28:41] Speaker D: Catalyze a lot of the participation rate. We could always support it with more education and awareness and that call to action. So we have to fill in some gaps, obviously, on how people find those clinical studies.
[00:28:53] Speaker C: But I certainly think there's some space.
[00:28:57] Speaker D: For that tools being developed.
[00:29:00] Speaker B: Okay, I got to ask that clinicaltrials Gov presumably fills that space, not in its current state.
Enough said.
[00:29:11] Speaker D: The intention was there.
We've missed the mark on it being really accessible and people being able to understand and notably find a trial site.
[00:29:21] Speaker C: If it's an actual clinical study. Yeah, absolutely.
[00:29:24] Speaker B: Well, hey, this has been a ton of fun. Vicki, thank you for taking the time out of your morning, afternoon, evening to have this conversation. If anybody wants to learn more about the work that you're doing, Paladin, some of the really interesting insights that you're publishing, how can they follow you? How can they get in touch? What's the best way for you?
[00:29:43] Speaker C: So I do have some things on LinkedIn.
[00:29:45] Speaker D: Certainly people can reach out on LinkedIn. There have been some recent articles in applied clinical trials. Our patient disease strategy was recently a poster session at the 2023 DIA Global Summit. I believe that may be available as.
[00:30:00] Speaker C: Well, but there's lots.
[00:30:02] Speaker D: A Google search will help bring up.
[00:30:04] Speaker C: A lot of the articles as well.
[00:30:05] Speaker B: Vicki, again, thank you so much for taking the time. This has been a ton of fun.
[00:30:10] Speaker A: Thank you for tuning in. If you haven't already, please follow power on LinkedIn. Sign up for our live events and engage with us in the conversation. We hope to have you join us next time on power to the patients. Take care.
