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: In today's segment of power to the patients, we are lucky enough to be joined by Farah. Farah leads patient experience work over at Roche Canada, but I'll actually give her an opportunity to maybe introduce herself. Tell us a little bit more about what that means. Sure.
[00:00:46] Speaker C: Thanks, Brandon. And thanks so much for having me on today to talk about one of my favorite topics. I'm at Roche Canada and I'm part of our patient experience team. So our team in the organization really looks at how we are embedding and integrating the voices and experiences of patients, really at every stage of the lifecycle of our products.
[00:01:12] Speaker B: And what are some of the initiatives that this team takes on? How do you think about that?
[00:01:17] Speaker C: Yeah, it's a good question. I think we think about it in a variety of different ways. So the first is part of our team is embedded within the therapeutic areas that we work in. So for those disease areas, for those products, we're really thinking about where are we in the lifecycle of a product? What are the needs and challenges of patients living with these conditions across the country? Where do gaps and barriers exist for those people? And then what can we be doing as an organization to work with patients to create some of those solutions, to solve the problems? I think both at a system level and at a product and therapeutic level.
[00:02:04] Speaker B: Yeah, got you. And you mentioned across the patient journey, I imagine this spans r and d through to kind of post marketing.
[00:02:12] Speaker C: Yeah, that's absolutely right. I think the evolution of this work, at least from an industry perspective, has really evolved. Historically, the way we engaged with patients and patient communities was really transactional. We looked at patients who were on our products, for example, and we thought about, okay, what are their needs at this moment in time? I think where we're going and we're on this journey is how can we engage patients early and systematically along that entire patient journey? And as you said, that's exactly what we talk about. We talk about patient journeys. We talk about what happens right from when patients start to feel symptomatic. What does that journey like through the system look like? What does that journey through that disease area look like? And then what are opportunities where things could be going better, and what can we be doing to support those.
[00:03:16] Speaker B: Yeah, absolutely. So I want to revisit this and specifically focus in on R and D clinical operations. A lot of our audience comes from the R and D side of the house. But before we do that, I was doing a little bit of background research again and noticed that you're now the chair of the above brand patient council. What is that? Tell us a little bit more. Yeah, I will.
[00:03:36] Speaker C: So here at Roche Canada, we engage with, or we've brought on board a number of patient councils. So patient councils are one of the ways that we are able to engage directly with patients. We have them in a number of therapeutic areas that we work in. And as you mentioned, we have an above brand patient council, which is comprised of individuals who are patients and caregivers and who really we work with to help us get that external perspective on what are some of the issues and challenges that patients are experiencing out in the system, and how can we work together on solutions. So, for example, one of the things we're working with our above brand patient council on right now is embedding a more patient inclusive culture within our organization. So we're really seeking to understand what are some of those behaviors, what are some of those mindsets of a patient inclusive culture, what are those specific elements, and how can we embed those throughout the organization, and how can we recognize that it's not just patient experience? And patient inclusivity doesn't just rest with one function or one group in the organization, but how can we integrate it across everyone and everything that we do?
[00:05:05] Speaker B: Yeah, and let's make it a little bit real for the audience. What are some of the examples of things that you've started to see implemented in order to kind of further the patient experience? What are the tangible kinds of changes that you're looking for?
[00:05:18] Speaker C: So one of the examples I can share is in the creation, for example, of patient education materials. So every time we are looking to launch a product, we create a product monograph, right, that gets submitted to regulatory agencies. So there's a section in our product monograph that is actually for patients specifically. And one of the things we did in collaboration with patients, with our regulatory colleagues, and actually with Health Canada, is work on revising that section of the product monograph so that it contains plain language. It's in a format that's easier for people to understand. It helps them understand, for example, the side effects of their medication, the dosing, the mechanism of action, and make it really real for people so that it is written in a way that they can understand. So now, going forward every time we put a product monograph together, we are able to take that information and articulate in a way that is understandable for patients.
[00:06:31] Speaker B: Yeah. And is the set of things that you would communicate in patient education different in Canada versus other geographies? Help me understand the kind of geographic element to this.
[00:06:41] Speaker C: It's a good question.
Yes. So the short answer is yes, it's different in Canada. I think in general, it's a highly regulated industry. In Canada, specifically, we cannot directly advertise pharmaceutical products to patients. So what you see, and we see them on us networks, for example, the ads for pharmaceutical products come through our canadian feeds, but in Canada, we actually cannot promote products directly to patients. So there's actually, I think, from my perspective, an even greater responsibility that we have to make sure that we are helping patients understand clearly the benefits of being engaged in their own healthcare journeys and providing that accurate information to patient organizations, to patient communities, so that they can really make informed decisions about their own health care.
[00:07:44] Speaker B: That makes sense. I'd love to maybe go further up the value chain and start talking a little bit about R and D. How do you think about the patient experience and the patient's perspective informing the r and D side of the world?
[00:07:57] Speaker C: I think, firstly, it's hugely important to think about the patient experience from an r and D and clinical development perspective. I think that there are already ways that we're seeing regulators and other healthcare organizations look for ways that patients are being engaged in clinical development and clinical research. I think, first and foremost, if we understand what the needs of the people living with the diseases and the conditions are, we can create better clinical trials. Right? So it's not just in the protocol development, it's not just in the actual trial design. It's also in understanding geographically, where are the patient communities that are being impacted? Like, where do they live? How can we ensure that when we actually then have a trial, we are looking at where can we place the trial? Which sites can we physically place the trial at so that they become more accessible for patients with those conditions to access? I think we've seen how including patients in clinical trial development, it doesn't just sound and feel like the right thing to do, but when we do that, we know that there's a greater chance for there to be less protocol amendments. We know that there's faster time to recruitment if we engage patients in the process. And we know that the long term impact of this means that these products can get to patients faster if we integrate patient experiences right from the beginning.
[00:09:43] Speaker B: It all sounds perfectly logical and reasonable.
So why not?
Why not do that?
[00:09:52] Speaker C: It's a great question. I think in my mind, one of the biggest barriers is speed, because I think, and I'm really interested in your perspective on this, it's whenever we get, and I'll use Canada as the example here, when we get access to a clinical trial, the objective is like, how quickly can we recruit patients? How quickly can we get that first patient on therapy? It's how fast can we move this to the next stage? And so I think sometimes when we think about how to integrate patient experiences, that takes time to do. Right. So sometimes there's this need to balance. How fast do we need to do this versus how are we going to make sure that we're doing this in the right way so that we don't face barriers downstream? And I'm curious around your experience from this perspective, around that balance and how you ensure that patients are being included and what you've seen with that need to go quickly.
[00:10:58] Speaker B: Yeah, it's interesting. I think what you touched on there makes a lot of sense. I think there's this rush to get to the first patient in to get things started. And sometimes I think in rushing to get things started, it's easy to ignore. Okay.
Or easy to kind of punt the problems of how long is this going to take down the road into the future? Right. When everybody's oriented around, okay, we just need to get our first sites activated and our first patients started. Okay. That's great. We do everything that we can to kind of go quickly there, but then maybe we miss out on some of the things that actually drive the longer term, like success. Success, attractiveness of participating and reducing the barriers to participate. And all that kind of stuff starts to become an issue halfway through when we're realizing, oh, these are the barriers.
[00:11:45] Speaker C: And sometimes I've been really curious sometimes about why first patient in or site activation, why those kind of milestones are so critical. Because sometimes you can get that first patient in, for example, but then the delay to get subsequent patients takes very long.
And I'll call it the science of patient inclusivity. It's still new, and I don't know how much is being done, rather around measuring the impact of this. Right. Because I think sometimes we're also trying to balance, like, we want to see things happen quickly, right. There's this need to show impact and show results. But from a clinical trial perspective, are we really measuring what is happening when we are doing that early engagement? And are we comparing it against previous examples where we see, where do we see delays in the process?
And when we start to do that early engagement, are we actually eliminating or shortening those barriers over time? So I think that's new, and I think we haven't really seen the true impact of that, which I really believe is there.
[00:13:05] Speaker B: Yeah, I'm kind of curious. Have you done an assessment, quantitative analysis or qualitative analysis as to the top barriers for patients as they think about trials? Is that part of the kind of scope of work that you look at?
[00:13:17] Speaker C: It's definitely the scope of colleagues of mine that do this kind of work in patient partnership across our global organization. I think that it's probably very specific and dependent on the patient population, on the disease area, for example. Right. And I think that is where we're trying to go.
I think very generally speaking, we're aware of the barriers. Right. Like geography, for example, where people live in the country, how many trial sites we get the protocol design and the accessibility. But I think when you dive really deep into what therapeutic area are we talking about? What patient population, specifically are we recruiting for? That's where I think when you go through the process of creating those patient journeys and mapping out very clearly where gaps exist specific to that population, then you can really uncover, like, okay, for this subgroup of patients, we know different things about where they are and what those barriers are.
[00:14:23] Speaker B: Yeah, absolutely.
When we speak to patients every week, actually over at power, and we try to unearth this, and I think one of the things we're finding is that there are really three questions that patients are asking about trials when they're considering them. The first question is, why should I do this instead of what I'm doing today?
Is there data that suggests that this is going to be more effective? Is there data on the safety that should make me more comfortable? Is there science or credibility that papers that have been published that I should be considering that helps inform that this is a better choice for me? It's like, prove to me that this is like a product worth trying. Right? Yeah, that's the first thing. The second thing is then, does this interfere with my life too much, this idea of protocol design? How many visits, how invasive is this going to be?
Is the effort worth that potential benefit that we've kind of cleared and then the third one, and especially in the US, but I think all over the world, is logistically, is this feasible for me? Am I close enough to a site? Do I have the reimbursement for travel or reimbursement to kind of COVID childcare or whatever?
[00:15:36] Speaker C: Do I get time off work?
[00:15:37] Speaker B: For example, does my insurance cover this? How much of this does my insurance cover? How much of this is out of pocket? So can I actually participate at all? What we found is these are kind of like the three questions that go through a patient's person's mind as they really look and consider research. I'm getting curious, as we kind of think about that kind of framework. Are there any specific initiatives that you've kind of seen internally that kind of talk to this or a way that it's been laid out? Yeah.
[00:16:06] Speaker C: So I think that, for example, this piece on why should I do this? I think fundamentally, that's probably one of the biggest questions that I think we hear from people is even the misperceptions, perhaps around clinical trials and the concept, I think, that still is pervasive around am I being a guinea pig? Why should I do this? Why should I take a risk? Right. My son is actually in a clinical trial right now, and it made it really real for me because I had to think through all of these things.
Why should we do this? Especially making a decision on behalf of somebody as a caregiver, and again, going through all those logistical questions around the feasibility of it, around does it interfere with my life? Because it's a big time commitment as well, just those visits. And so I think we've done work, I think, at all of these levels. For example, why should we do this? We've done education with patient communities around what it means to participate in clinical trials, why people should be involved, what this actually means, and addressing some of those specific questions. And then I think working with sites around, does this interfere with my life? And working through those questions. And so, for example, I worked in a rare disease space a few years ago around, in a condition called Angelman syndrome. We actually worked with the patient community in that case to really understand what were the needs of that patient community, where did they live? Did it make sense, if we placed a trial site in one city, would it make sense for them to actually go there physically? And how often would it make sense for them to go? What were the requirements? What were some of those protocol elements that would have made it easier or less easy for them to go? So I think it's happening on a very therapeutic area, by therapeutic area perspective, which I think is the right approach, because otherwise we get caught up in those generalizations. Right. And then we tend to paint all patients and all patient communities with the same brush, which I think I'm encouraged to see that we're not doing that so much anymore. Right. We really are looking at this on a therapeutic area, patient population trial basis as we go.
[00:18:47] Speaker B: One thing that we've spoken a lot about offline is this idea of where do patients go for information day, and how are patients using the Internet to try to take control of their own situation? What are you seeing there? What trends are you seeing?
[00:19:03] Speaker C: We're seeing that patients are absolutely using digital tools to help them and to understand what's happening in their disease areas and on their own journeys. I think specifically, I've seen Facebook be a huge resource for patients, especially in the rare disease space where you almost have, because you can have gated communities, right? You can have closed communities of people who are living with the condition or who are caregivers, who are sharing their experiences, who are answering questions for each other, who are incredibly well educated on their own condition and their own diseases, and sometimes who are proactively taking that information to their hcps to drive the diagnosis in some cases. So I think we're definitely seeing people use social media as a resource, so that's one place they're going. I mean, patient organizations, formal patient advocacy groups, I think, are also a resource for people around where to go for disease information and for health information. And then I think organizations like yours, I think that from what I've seen, your organization is really making this information accessible to people, and it's accessible in a variety of ways, like the way you get it and also the way the information is presented. That really speaks to the growing issue of health literacy. Right. How are we making information accessible, digestible? How are we helping people understand? What does this mean for me, and how then can this impact my day to day life?
[00:20:50] Speaker B: Yeah. One thing that we found is that because we've just made it so easily accessible, right. It's just a website, and there's no logins if you need it, if you want to go in, there's no password requirements. There's none of that kind of stuff. We're seeing not only patients and caregivers using it, we're seeing physicians use it, too, as an alternative to using clinical trials. I just shared a story yesterday on LinkedIn where I learned that there was a doctor in Croatia that was using it to look for trials on behalf of their patient, and they just kind of stumbled upon it. I guess it's kind of amazing what happens on the Internet when you have a superior kind of user experience.
[00:21:29] Speaker C: It is for, you know, I think especially in Canada for so long, we've relied on the physicians being that intermediary, right. Between what we can share and what the patients need to know, for example. And I think that, yes, physicians are still a great resource to their patients, but they also have other barriers that exist for them and other pressures where they can't always share the information, the scope of information, the depth of information that a patient needs. So how can we work on other ways to make information really accessible to people and in some respects, give that power back to people? Right. Make them feel like that journey is in their control? And I think that we've seen so much data around what empowered patients can do and how that leads to better outcomes. So I think that's hugely important to us.
[00:22:34] Speaker B: Yeah.
How do you find empowered patients today?
What's the approach?
[00:22:40] Speaker C: There's lots of different approaches. So I think, first, both locally and globally, we have relationships with lots of established patient organizations. Many of those are run by empowered patients themselves. Many of them have a number of patients that are part of the organization, that are open to sharing their experiences. I think we also look at the physician community to be supportive of whether they know, of whether they see those patients in their practice that they can easily identify, and that's another channel. And then I think this concept of doing that, social media, listening and understanding and making ourselves aware of who are the patients out in social spaces that are talking about their experiences, that are sharing, that are connecting with others like them? I think the empowered patient today looks very different from empowered patients.
When I started in the industry, like ten or 15 years ago, where you had to be part of a formal patient organization, many people that we work with now don't identify with or feel like they can't relate to those formal patient organizations. So they're building communities of their own in social spaces and are open to connection and to that sort of thing.
[00:24:05] Speaker B: Yeah. So here's the segment where I shamelessly ask for your advice.
If you could will us to do anything at all, what would you have us do to have the most impact? I'm kind of curious how you think about that.
[00:24:20] Speaker C: So I'd say, how can we communicate that as patients, we are not passive recipients of care, right? That how do we, if we can uncover and unlock the ways for people, especially diverse and underrepresented communities, to have access to education and feeling empowered? I feel really passionately about that ability to give people back that opportunity to be informed about their own healthcare decisions, to feel like they are in control of that. So what can we do to give that power back to people and make them feel like everything they do can impact their own journey. It is not up to the system. The physician, those are all players in this journey. But you're driving the car, and that's where I feel like, how can we, and I don't know the answer to this, Brandon. So I think I've kind of maybe answered your question with a question around, those are the populations, those are the people that we need to figure out how to reach.
But I think that starts with so many systemic issues that you kind of touched on before, right? That how are those people accessing primary care? How are those people accessing health information? How are those people getting time off work, to go to appointments and that sort of thing? I think there's a whole host of.
[00:25:56] Speaker B: More questions that we need to figure.
[00:25:59] Speaker C: Out how to solve.
[00:26:01] Speaker B: You know, one of the things that we think about a lot is how did Zillow become truly, you know, what they've done is they've become the go to brand for housing information. And I guess maybe not so relevant in Canada. What is it, realtor.com or something? Oh, you got it. You know, the realtor ca, certainly in the US, they've democratized kind of housing information. And in doing so, anybody who's kind of interested in learningership and taking a look at what's out there and just passively browsing for entertainment, almost sometimes that's the place to go. And along the way, one of the interesting things that's happened, right, is that it wasn't just for the consumers like the homebuyers. It's also become equally powerful tool for the brokers, right? And now brokers are sending their kind of clients list, like zillow listings for homes.
And one of the things we think about is, is that the path that we eventually get on by becoming not only the go to resource for individuals, consumers, patients, but then also for htps as the de facto platform that they prefer using. And is that kind of like the virtuous circle that makes us really sticky?
[00:27:17] Speaker C: Yeah, I think that's a really good way to look at it. And I like the analogy that you used with Zillow. And it always makes me think about how are we making health data accessible to patients and to people, and how are we, for example, and I'll use my parents because my dad has type two diabetes, for example. So if he goes to an appointment and asks for his blood work results, for example, right, he gets this printout.
[00:27:48] Speaker B: That makes no sense to him.
[00:27:51] Speaker C: Yes, he got his health information and he got this data about himself, but he doesn't know what to do with it, what it means, and now what he should do in his day to day life.
[00:28:03] Speaker B: Right.
[00:28:04] Speaker C: And so how are we as a community? Because I think the value is how we can all work together, right, to solve some of these big challenges, like how can we make it easy for people to understand what to do, to understand where to go, and also not feel confused by all of the information that's out there. And I guess you talked about that one case study in Croatia with that physician that's actually using your tool and your site as a way to find out trial sites for his patients. And how have you seen this evolution in terms of not just the openness from, I think, hcps and health professionals, but also at the site level and even at the sponsor level, right. Are you seeing a growing interest in collaboration? Are you seeing the walls come down a little bit and people being more open? And I guess what's driving that in your mind, what do you see happening?
[00:29:12] Speaker B: Yeah, that's a really great question. I think at the end of the day, it all comes down to the fact that patients are using our platform. That's kind of like the indisputable fact there are tens of thousands of patients using our website every single month to go learning about trials and that consistent flow of new attention, new patients who are interested in learning about research. It's proprietary. It's on our website. It's on our platform.
What we're seeing is that researchers are really happy to connect with those patients. They're really excited to meet those patients that are nearby and engaged and want to learn more. Right. It's not just the patients that are seeking out information, as you would know, as everybody else in this space would know, everyone is trying to recruit faster, everyone is trying to meet more patients for their studies. Right? So the fact that we have them using our website is really exciting for a lot of folks. We've had researchers across 20 of the top 20 academic centers in the US already sign up on our platform and start using it to connect with patients. And we see new researchers every week. I just saw somebody sign up from Stanford yesterday.
It just happens every week, which is really exciting because the more we get the word out, the more that people learn about our platform as kind of an option to connect with these patients, the more momentum that we have.
[00:30:33] Speaker C: Yeah, I know, that's amazing. And I think it's incredible to just even having gone through clinicaltrials gov to even try to navigate that to now what you guys are offering, and the accessibility of it, I think, is really incredible.
[00:30:51] Speaker B: So let's imagine five years out. What is your wish for how clinical trials are run? Patient recruitment is done. Patient engagement for research is done in five years. If you could change things, how do you hope that we kind of evolve as an industry?
[00:31:08] Speaker C: So I really hope that we can almost be able to leverage technology more effectively to be able to tell us if we know that we are entering a disease area and we know that we need to look at trial sites that we're able to very quickly understand, where are the communities of people with this condition living?
How do we have a mechanism to educate and inform them almost collectively in real time? We talked just now about, it's individual patients, right? It's like one patient at a time.
[00:31:49] Speaker B: It's.
[00:31:49] Speaker C: It's one family or caregiver at a time. And I think that's how you build momentum. And so how do we scale that? Right. How do we really look at populations of patients in various disease areas? How do we do that education en masse? And then how do we. I think part of this is how do we bring patients closer to their journey? How do we have people getting informed about these things, like months in advance so that they have that ability to predict and to influence where that happens. Right. Where we're actually then taking the needs and experiences of patients and we're not saying, oh, where should we go? Let's ask patients that we know ahead of time that patients have a way to proactively contribute to where that's going and where they live and what they're looking for, and then that's incorporated into how we design them.
[00:32:48] Speaker B: Yeah, I can imagine a world already where we've got the patients on our website that are looking for research, and maybe we're able to kind of collect insights from them, collect feedback from them that informs. Kind of like the development of the pipeline that's coming up next year and having a little bit of a forward deployed data collection process that informs the pipeline that's not yet ready. I could see us finding a way to do that in a really interesting way.
[00:33:14] Speaker C: I can almost see it almost as, like, maybe this is not the right analogy, but, like, tinder for patients, right? Like, how can you look at matching where patients and people are living with a condition that you know you're going to be designing a trial site for or a trial for, and then you're actually seeking that feedback and those insights in real time as you're designing. Right. And then you're able to give that feedback also, because I think it's one thing to take insights from patients and patient communities, but I think we have a responsibility to take those insights and do something with them. Right. And then how are we giving that back to patients?
[00:33:55] Speaker B: Yeah, I almost think of it as the Google search graph where Google knows everything that you're searching online and Google can tell advertisers there are people in this geography that fit this description that are interested in this thing. I can imagine us having the power search graph where we. Hey, like, there are patients in this geography that are interested in research for this condition, and here's what is important to them and here's what they're worried about. So if you want to engage with this population of people in this city or across these different cities, this is how you should be thinking about designing that research. Right.
[00:34:32] Speaker C: And then to go further downstream with that. These are patients or people who, for example, if there are certain policies that need to be in place for people to access, for example, like time off work, insurance coverage, childcare, that you have a proactive way to. Google can predict that. Right. Well, of this patient population, and this is, I think, where the future of AI is going, of this patient population, this percentage of them will require access to paid time off work or other policies that can then support and create that enabling environment for them to actually get to the trial site and get to the appointments and that sort of thing.
[00:35:22] Speaker B: Sure. Absolutely. Well, hey, I think that's a strong place for us to close here. Any last words, any last thoughts that you want to impart on the know?
[00:35:32] Speaker C: I think that we've seen this space around patient engagement and patient experience grow so much. And I think I'm personally and also within my organization, so encouraged to see what's happening around the world, around the ways that patients are being engaged in healthcare decision making, and I'm really excited to be part of it. I think that there's so much more for us to do. Like we are on this journey we've started, but I think, like you said and some of these ideas, there are so many places for us to go and to take this, and I think that partnership and collaboration is really the way to do that. So I just want to say thank you for the conversation and just even recognizing the incredible work that you guys are doing.
[00:36:23] Speaker B: Oh, thank you for saying that. This has been so much fun. I really appreciate you taking the time out of your morning to have this conversation. I know it's running over lunch for you.
Again, thank you for being here.
[00:36:36] 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.
[00:36:45] Speaker B: We hope to have you join us.
[00:36:47] Speaker A: Next time on power to the patients.
[00:36:49] Speaker B: Take care.
