Aligning Patient Engagement and Site Support

Join Jena Daniels, VP of Customer Value at Medable, as she shares how Medable is transforming clinical trials through patient-centric innovation. Jena shares insights on the value of Medable's Patient Caregiver Network, strategic partnerships with organizations like Rare Patient Voice, and their commitment to supporting research sites.

Tune in to learn how Medable is improving the clinical trial experience for patients, caregivers, and sites alike by incorporating patient and site feedback into their products.

Transcript

Jimmy Bechtel: 0:00

Welcome to SCRS Talks provided by the Society for Clinical Research Sites. Thank you for joining us as we explore the latest insights, trends, and innovation shaping clinical research today. I'm Jimmy Bechtel, the Vice President of Site Engagement with the Society, and today I'm joined by Jena Daniels, the Vice President of Customer Value with Site and Patient Engagement with Medable, here to share a little bit more about the great work that they're doing in the patient engagement space, as well as some exciting innovations that they're bringing to the research and clinical trial execution process. Jena, awesome to have you really excited to talk about this subject with you, if you wouldn't mind, I'd love to start things off and learn a little bit more about you and of course about Medable

Jena Daniels: 0:46

of course, thank you so much for the opportunity and just incredibly excited to share what we're doing at Medable to really advocate on behalf of the patients and the sites and truly how we can make their experience better from start to finish. So I myself have been a clinical trial participant in five different trials. A few of them have been brick and mortar, a few of them have been hybrid, and a few of them have been fully decentralized. And so, I come to the table with not only a professional background working in clinical trials within Medable for the last six years, As well as at Stanford and Harvard as a clinical research coordinator, but also as a study participant myself. So when I get to advocate on behalf of these families and on behalf of the sites, it looks at it from this really holistic perspective of my own personal experience, my professional experience, and also listening and learning from probably thousands of, of individuals on what they've gone through as well. So really excited to speak with you today.

Jimmy Bechtel: 1:49

That's excellent. I am excited as well. A Medable, we all know are doing great things and I'm excited to talk about some of them. Want to start things off, Jena highlighting that you were selected a Medable was selected as a top patient engagement trailblazer in the Everest groups inaugurable clinical trial patient engagement products assessment. So I want to learn a little bit more about that patient caregiver network that I know was part of that trailblazing work and how that was part of what you are doing in that patient engagement space.

Jena Daniels: 2:21

Of course, well, this recognition from the Everest group is truly a testament to Medable's commitment to reimagining the clinical trial experience when it's informed and influenced and guided by patients and their caregivers and also the sites. So, about six and a half years ago, a little bit more than that, I joined Medable. And on the very first day that I joined, I was asked what legacy did I want to leave behind? And I'm someone who really focuses on the present moment. And I was like, okay, well, what legacy do I want to be part of? And thinking about Medable's mission, which is to enable effective therapies, to get to patients faster. I knew that whatever it was that I was going to be part of, to make a difference, it had to be rooted in patients and their experience. So from there, within about a week or so, I had proposed the strategy of creating our own patient caregiver network as part of how we learn and influence and guide our product road map and decisions, how we speak with our partners and our clients, what our value and messaging looks like and externally, but also how do we build a culture around supported sites and engaged patients? So I was incredibly grateful and it was such a gift to be supported from not only the C Suite and our senior leaders, but also the board on identifying that prioritizing this patient engagement component of Medable over the last Six and a half years or so was a priority for them as well and so we initially started with a small group of expert patient advocates that were mainly based in the United States to really just start to craft what the strategy around this network could actually be and, you know, in our space, it's so highly regulated and there are so many security measures and anonymity and making sure that we are protective of every single person's experience and data. Which is imperative and required and necessary. And for technology companies and SAAS platforms and, these companies that are in the space that are focused on working with patients and with sites, we need their involvement in the construction and foundation of what we're building. And so I knew there had to be a way to work around not being able to reach directly out to patients using our technology or currently in those clinical trials we were supporting. And. Established a way kind of around it where we targeted patient advocates to come speak with me and the rest of the team and really share what their lived experience was, whether it was on or off Medables technology, the whole goal was understanding what was working well, the challenges they were facing and where technology might be able to solve for that. And so after about a year or so of having this smaller expert group of patient advocates, we realized that we've learned so much, but there was still so much for us to uncover and that these voices and these experiences were still a small sample size. So we expanded the network to make it global, looking across different countries, including more therapeutic areas, including more experiences, whether they had participated in many trials, only one, or had wanted to participate, but unfortunately were excluded due to the eligibility criteria. And so what we really did is we focused on how can we continuously learn and grow and iterate with these individuals to build solutions with them and for them that are really truly meant to empower them during their clinical trial experience. And so the network continues to grow. And what's even more exciting most recently is our work in partnership with rare patient voice to have a much more broader and diverse opportunity to speak with more people by utilizing and partnering with them to reach now thousands of individuals that we can pull into helping to create that product roadmap prioritization guided by data and particularly insights from these patient advocates, as well as understanding from a technology adoption standpoint, that strategy around onboarding and training, how can we really fine tune it to be effective, Simple, easy to follow and getting people to use the technology kind of right off the bat. So it's been such a joy and a gift and I'm happy to dive in into anything more that I mentioned.

Jimmy Bechtel: 6:52

Well thanks for the very thorough explanation, Jena. It's, it's really cool to see the progression. I think primarily, most of all you, Saw this need, you gained support from your leadership to incorporate the patient feedback, and the work that you were doing through a very small initiative. And it's grown into this caregiver network that I know we're gonna talk a little bit more about and, and subsequent questions. But it, it's, it's just really cool to see how. That's really, truly how things start. You get support, you try it, you see the value and the evidence, gather the evidence in how it really does advise what you're doing. And probably is something that sets you all apart from the rest of your peers.

Jena Daniels: 7:32

Absolutely. I mean, it has been an honor to be supported in such a way. You know, from our CEO, Michelle Longmire to everyone else, just recognizing that this is something I'm incredibly passionate about, and they too identify and see the need and the passion behind it as well. And so very grateful for, working together and really identifying this need early on. And it's grown in ways that I couldn't ever have imagined. And I'm so hopeful and grateful for where it's gotten to and just can only imagine where it will get to.

Jimmy Bechtel: 8:08

Absolutely. So Jena, can you share some of the ways that the patient caregiver network informs more specifically the platforms that you have developed and what it does to improve the patient engagement long term for those products.

Jena Daniels: 8:22

Yeah, absolutely. So our current patient caregiver network is about 100 people large, and it's a global representation of not only patient advocates, but also their caregivers as well. And the goal of this network is to truly help guide and shape Medable's design strategy, product features and functionality and capabilities to enhance that patient experience and drive engagement and retention. And so the way I kind of talk through it are these three key pillars that we work with them on. So working on learning from their insights and their expertise. Things like the training and onboarding material or helping with our help desk and creating this empathy training. So that way, when our help desk is speaking directly with patients, they've gone through empathy training and can really be supportive to our in app welcome guides that help in real time guide our, our patients that are using our technology on how to use the technology and making sure that they feel seen and supported and know that they're not alone. To our patient and site resource section where these resources we provide a standard list that was created by the patient caregiver network on resources. That would be super helpful to have when you're participating. The next pillar is focused on that product collaboration. So looking at bringing them into the fold when we are discussing features or functionality or doing user experience or user design, what should we be thinking through like accessibility concerns or study workflows or Different functions that would make participating for them much more accessible and easy to thinking about the study workflows and the protocol expectations when we were able to partner with our clients at that early stage and saying, Hey, look, what you've created in your protocol may not be as easy to attain as you imagine. Here's the feedback from individuals who have that lived experience explaining how it might better be implemented or thoughts on this type of content versus that, or notifications, et cetera. And then lastly, that support aspect or that feedback aspect. So building off of that protocol feedback also being able to say, Hey, look, these are the, the preferred sensors or wearables. And these are the reasons why, or if you're looking at different quality of life instruments. And there are multiple for a therapeutic area being able to say, I prefer to answer this questionnaire or this validated instrument over that because of the language or the wording makes me feel more supported and they help provide what those emerging trends could look like as well as, you know, Providing, like I mentioned, that feedback on that content. So, from a holistic standpoint, there are key deliverables and key ways in which we work with our PCN, but my favorite thing, to be perfectly honest, is monthly we hold these patient speaker series, where the whole goal is to have every single person at Medable be able to learn with and speak with and ask questions directly to patients and caregivers. Those that have participated in DCTs to be able to answer those questions and learn directly from them those lived experiences from start to finish. So we have these monthly patient speaker series from the members within our network, and they share what their health journey looks like pre and post clinical trials and then during the trial. And, we always ask them if they were ahead of our product team. What would, you know, what would they have built out next? And it not only helps us remember at our core. Why we're doing what we're doing, but it also enables us across the entire company to think about how we might be able to think about this particular person and their experience and do our jobs better. And so on behalf of the patients, we're constantly thinking about ways we can improve what it is that we're doing. So that way, when we are having our technology live in these studies, we truly believe and know that it is engaging, easy to use, built and empowered by patients to increase that steady adherence and retention.

Jimmy Bechtel: 12:41

That's amazing, Jena. So much work and detail I know goes into it's great to hear there isn't just one facet is what I'm trying to say. There isn't just one thing that you're using these guys for. It's taking this patient feedback, which I think is the most important component of the work that you're doing here, in my opinion, and incorporating it into what you're doing. Product and iterating on that and this continuous kind of feedback loop that we really seem to struggle with as an industry. And so it's, it's great to hear that you guys have a process in place to help enable that. So can you talk a little bit about then diving a little bit deeper how your strategic partnership with the rare patient voice group has impacted the PCN, the patient care network?

Jena Daniels: 13:23

Yeah, of course. So with that partnership with rare patient voice, I think what it's enabled us to do is to get new opinions and new perspectives and also be able to have additional fresh eyes on what our product looks like. So for those that have been in the network for a while, they've seen what our product looks like. And at times when we need kind of those fresh opinions or we want to spot check and say, Hey, is this onboarding material that we've created as simple yet robust and comprehensive as we need it to be. And so being able to have individuals come in who have that same experience of, you know, participating in decentralized clinical trials, but who have not yet experienced my maybe Medables technology, or maybe they have during one of their trials that they've participated in, but actually being able to Share firsthand what it would look like for someone who met new to be able to experience and where there are opportunities for us to iterate on, I think is such an incredible growth opportunity for us from a product standpoint as well as learning new emerging trends or new experiences that they're having out there in the field now and things for us to consider. And then I think most importantly, too, is that just because you speak with one, two or five individuals does not mean you have a true representation of all these different experiences in different therapeutic areas or demographics, et cetera. And so the partnership with rare patient voice really enables us to reach such a larger, more global and diverse group that you know, instead of having them pulled into our patient caregiver network and, and kind of having those expectations and the contracts that we put forth, making sure we pay every single person for their time Through rare patient voice, we still pay them. They're still under contract, but with rare patient voice, and then we're able to work with rare patient voice to find the specific needs and specific advocates that we're looking for. If we have a study that's in a rare disease or a study that's looking at, you know, stratifying their understanding across notifications across different ages or global representations, et cetera. We can partner with Rare Patient Voice to be the best partners to our clients as well as to the patients that would be using the technology by learning from additional people. So I think that it is a huge step forward for us and they have been so lovely to work with and partner with.

Jimmy Bechtel: 15:51

I imagine so. And incorporating that unique and very important patient perspective, given the climate and direction that our clinical trials are taking with focusing on so much rare disease and the complicated Studies that we're doing. I think it's a, it's a worthy endeavor and probably brings in a lot of really valuable and unique opinions and, and thoughts and perspectives to the iterative work that I know you all are doing on your product. Jena no doubt patient voice, patient impact is critical to product development and the work that we're doing here. And it's been great that you've been able to share some of the techniques and the approaches that you all have been able to do. I know our listeners will be able to pull a lot of great nuggets out of some of your explanations, but we know that site feedback is also really important to the work that Medable does and is something that you guys bring in as well. So can you talk a little bit about as, as we kind of wrap our conversation up here, how you solicit site feedback and what is Medable doing to address maybe some specific site challenges.

Jena Daniels: 16:51

Of course, and as a previous, as I mentioned, CRC. and CRA at Harvard and Stanford, I am just as equally as passionate about making sure that we have trained and supported sites staff so that way they can focus their time on the relationship with the patients that they have in front of them. So for me, I can remember so many different moments where I was using new technology and not remembering what button to click next. And I have someone who's participating in front of me. And it's like, Your, your heart sinks because you know that they already feel like they're in this like uncontrolled situation and you're meant to be there as a site personnel to support them and to make them feel like you've got it under control and that you're there to help them and that you know what's coming, what's going on and not being able to kind of remember the next button to push, it just I know that feeling all too well. And so When I was able to take on our site strategy as well it just brought me so much joy thinking about how we can make the best training and supported solutions for sites as well. And, and complement to what we're doing for our patients because without engaged and supported and trained sites, you won't have engaged patients. So from our strategy on the site side, it's it's quite similar in some degree as we do for our patients. So we work with different site networks to be able to learn from their experience and pull them into our product and be able to build alongside their opinions and perspectives and burdens and challenges. And Fuel our product roadmap with their insights as well. So just as we do with the patient components of our technology and the patient experiences, we do the exact same thing with our sites. We also have within our team, several members who have previously worked at sites. So we make sure that we are tapping into our colleagues and their knowledge as well. We also really focus on partnering with our clients when they have these amazing site networks and being able to work alongside with those site networks. But I think one of the things that I'd love to be able to hit on is that our site training and support strategy has these five key pillars, starting with our training materials that are not only product specific, but also study specific and comes and we provide these and deliver these in multiple different formats from our User guides to demo videos to live training sessions to supporting SIV and IM meetings. Our device and logistic delivery team is best in industry. They are just a phenomenal team with, you know, device provisioning with over 99 percent on time delivery, which is just so impressive. To supporting the CRAs and the sites with these ongoing training opportunities and refresher courses to our incredible 24 seven help desk team that's available in all languages and supports across all time zones. And I think that these five kind of key pillars, in addition to again, being part of the foundation of our product and helping guide and inform that our site training and support strategy is something I'm incredibly proud of as well. And I think it's a huge testament to the teams that have worked on the site success aspects of it prior to me being able to, to lead it and also where we've been able to take it this year. So it's been a really exciting endeavor as well.

Jimmy Bechtel: 20:31

It sounds like it. It's really, really impressive, and I appreciate your emphasis and value placed on not only the patient perspective that we spent a great deal talking about today, but also the site perspective, and it's awesome to hear that there's processes in place to engage with sites and iterate on product as well. And it sounds like there's been a lot of really awesome. And valuable innovation and feedback, right? The support thing is a huge aspect that we hear from sites and it sounds like you've addressed some of those challenges directly, likely as a result of patient and site feedback. So wonderful. And, and kudos to Medable. It's no wonder that you're recipients of this year's award. And I'm excited to see what's next for you all and what comes from some of the great work that you guys continue to do with sites and patients. So Jena, thank you. for your time. Thank you so much for being here with us today and sharing a little bit of more about some of the work that you're doing with patients and with sites. And again, excited to hear what comes next.

Jena Daniels: 21:26

Of course, and thank you so much, and I do want to give another huge shout out to Rare Patient Voice, as well as the entire team at Medable, and most importantly, our incredible patient caregiver network, as well as our site advocates. We would not be able to do what we do without you, so thank you from the bottom of our hearts, and excited to share and show what we get to do next, hopefully in the next coming months.

Jimmy Bechtel: 21:48

Excellent. Well, thank you again. And I want to make sure that everyone listening doesn't forget to explore other site focused resources in addition to SCRS talks made available to all like various publications and webinar opportunities on our website, myscrs. org. You'll also find there a wealth of content and details about upcoming engagement and connection opportunities with partners like the ones we're talking with today. Thanks again for listening and tuning in. And until next time.