SCRS Talks
SCRS Talks, hosted by the Society for Clinical Research Sites (SCRS), is a platform for clinical research industry professionals to hear about valuable information shaping the research industry today. These short interviews will provide new perspectives and insights on pressing topics, current events, and the research community.
SCRS Talks
Beyond Recruitment: Building Real Community Trust
How can clinical research move beyond one-time community outreach to build lasting relationships that advance health equity? Kristin Tolbert of Jumo Health shares how grassroots partnerships and sustained engagement are reshaping patient participation in trials. Drawing from the recent Health Equity Congress, she discusses why this work is more urgent than ever, offering practical strategies to build trust, measure impact, and ensure community voices are meaningfully included in clinical trials.
Welcome to SCRS talks provided by the Society for Clinical Research Sites. Thanks for joining us as we explore the latest insights, trends, and innovations shaping clinical research today. I'm Kathy Mickel, director of Education and Engagement. Today I'm excited to be speaking with Kristin Tolbert, associate Vice President of Health Equity Strategy with Jumo Health. And a well-respected leader in health equity and clinical trial inclusion. Kristen invited SCRS to participate in a workshop and panel at the 2025 Health Equity Congress in Atlanta this past May, where we tackled real world challenges and solutions around community engagement to ensure representative research. Kristen, thank you so much for being here today.
Kristin Tolbert:Thank you for having me, Kathy.
Kathy Mickel:Yeah. Before we dive in, Kristen, please tell our listeners a little bit about Jumo Health and your role within the organization.
Kristin Tolbert:Sure, absolutely. I lead all of our health equity focus programming and partnerships. And Jumo was founded in 2009 as a purpose-driven patient experience organization, really built to address the emotional, cognitive and social barriers faced when choosing whether to participate in clinical trials or not. We combine behavioral science, health literacy, and real world storytelling to create an engagement system that really tries to reduce friction, eliminate the fear that many people have when considering participating in a trial and build that trust, especially for complex studies where we need to empower patients. And we really look to do that by empowering them with the clarity, confidence, and support needed to enroll and stay actively engaged.
Kathy Mickel:It sounds like the pillars of Jumo health around the emotional support, the behavioral science pieces really align with community engagement and of course community engagement has become a hot topic across clinical research. Why do you think it's getting so much attention right now, Kristen? And what do you think is really driving this urgency as it relates to community engagement?
Kristin Tolbert:Yeah, it's a great question, Kathy. Our work at Jumo during COVID really highlighted how certain communities were disproportionately impacted compared to others, and that was a real big aha moment for the industry at large. And that's where we really got our health equity community based approach started and really centered as something that the organization needed to include in how we support studies across the board. Every study has some population that is underserved or underrepresented or needs support. A lot of it has to do with COVID and just the blatant disparities that we all saw. Similarly coming out of that, related to it, the Diversity Action plan mandate for clinical trials really centered the need to acknowledge where trials, specifically, where populations don't reflect the patients who will ultimately use the medical products. That really also has impact on the generalizability of research findings and potentially contributes to the disparities that we're seeing. This mandate coupled with the disparities that were on display most vividly perhaps for this generation. This really created a new level of accountability within the clinical research community around ensuring study populations reflect real world patient groups across markets and help connect the dots between the public and the private sectors, which was big? And between the clinical, the commercial, and the community. They were really disjointed at that point. And so all this excitement really did come to life and pushed clinical studies, sponsors, site teams to find a way to engage and recruit audiences that were hesitant and mostly unaware of how clinical research works. That hesitancy in many cases also is mistrust. The industry really quickly learned that spray and play media campaigns were too broad to be effective. Despite local sites best efforts in market, they too were an unknown and are for many still, an unknown entity in the community. Events and experiential very much so became a go-to solution, but all of us collectively learned over time that partnership with community focused organizations, advocacy groups, et cetera in a grassroots way is really integral to break through all of those barriers and awareness. This has been a rapid learning process in the last three to five years.
Kathy Mickel:I totally agree. Things have definitely shifted. I like how you have talked about the aha moment post COVID or right after COVID, and then moving into just, we need to be adaptable. The spray and play is no longer effective. We can't use the same approach for everybody. We really need to make things tailored. The events of late, the experiences of late, the knowledge of our patient communities has evolved. So we've got to step up to that. I'd love to hear a little bit more, because this was definitely addressed at the Health Equity Congress that theme that. Community engagement has to look different, right? It has to look different today than it did in the past. And so can you share a little bit more about the current societal and political dynamics that are reshaping the way that we engage communities?
Kristin Tolbert:Yeah, absolutely. This is a very particular time we all find ourselves in, and firstly, going back to our previous point around event marketing and creating experiences on the ground. It's a great tactic, but what is truly needed is sustaining relationships that are built on trust and transparency, and that's more important now than ever quite frankly. Disease doesn't really care about the political or regulatory environment or policies in place. As an organization, I think we all feel like regardless of the sociopolitical climate as solution providers and I know based on the conversations we've had, so many of us agree. Sites, solution provider, sponsors, that we need to ensure that we're continuing to understand how disease affects specific communities differently. And in doing that, we can create solutions and programs that engage those patients that are affected by the disease being studied regardless of their background or identity. I'm definitely proud to say that a large majority of our partners and sponsors agree, good science is still good science. And so from that perspective, I think what we are seeing and anticipate more of is an evolution rather than a reshaping of how teams are going to market and how teams are engaging with communities. We're evolving as an industry from the tactical to the strategic. From isolated engagements and one-offs to ongoing relationships over time to thinking about the marketing funnel in a way that maybe clinical teams weren't always doing. You're seeing a lot of folks come from the commercial side into this space, like myself, and bringing some of that knowledge around how we drive awareness, consideration, et cetera, and how that overlays with the process and the patient journey to make the decision to join and stay in a clinical trial.
Kathy Mickel:I really love you emphasizing that this is disease agnostic. And yet there's this core piece around sustaining relationships, building trust that hasn't changed. It's at the core of being human. We are working with humans and in clinical research, community engagement is all about the humanity of it. I love that there's this core North star to what you're sharing. At the Health Equity Congress, we tackled some focus areas that are pretty strong pillars. Those included sustaining engagement, being able to measure our impact on community engagement. What were some of the best practices or aha moments that stood out to you from those conversations at the Congress?
Kristin Tolbert:We did. We had a great time, and thank you, Kathy, for participating and for supporting the workshop, planning and facilitating one of the groups. Also for sharing the outputs that you all had from your co-creating your roadmap to community engagement session during the include summit you all held in early April. Something that was really great about, for me, the conferencing this year in particular, going back to your previous question around the moment that we find ourselves in there's a real need that's understood for us to collaborate and share our learnings in a collective way so we all grow together. That was really helpful in getting all of that and getting voices together in the room. Community industry leaders from across the stakeholder ecosystem, folks from sites, folks from each market themselves, sponsors, vendors, partners, et cetera. And so when it comes to where we landed with the outputs. Particular for community engagement, they very much so echo what we've been saying so far. The breakout team landed on three key best practices. The first is ensuring engagements are long term and sustainable over time. Not sort of popping in,"Hey, we've got this thing" and then retreating and disappearing from the community. Number two, respecting community partner relationships. Understanding that their reputations are on the line when supporting clinical awareness and recruitment, and that one is really important. Sometimes when we're looking at scoping and when we're designing these things, it can get a little transactional and we can think of each other as vendors versus partners, and so when we're engaging with particularly community partners or organizations in these markets and they're tapping into their local networks, we do have to really understand and respect that relationship with a lot of care. Then in doing that, that also allows us to, the third point, which is really important, is build those local relationships and include PIs in those markets and support their understanding of what are the community needs through more interactive educational approaches. When it comes to measuring impact, that was really interesting and particularly important as I think a lot of us share the struggle of how we quantify return on engagement. And so that team also knitted out with three being established short and long-term goals that allow for the time it takes to educate, develop, trust, and drive consideration among hesitant populations, which is particularly important. Understanding studies are not finite. They have enrollment targets, dates, first in, first out, et cetera. And if we want to effectively drive recruitment for trials, we need to start much earlier and establish that relationship and have the conversation within these communities before we really broach the subject of testing and recruitment and studies. And that's really so that we're priming that market to say yes. Understanding that that requires us to have long and short-term goals when we're thinking about how we design solutions. And number two, create incremental measures of success that understand that timeline and that incorporate both program level needs as well as study specific KPIs that are both qualitative and quantitative. Our measure of success cannot be enrollments or randomizations. It can be a metric, but when we think about the full cycle of work that we need to do to engage communities in a sustainable, authentic way, there are both qualitative and quantitative measurements along the way that help inform how we continue getting better and how we define success. And then lastly, number three, consider measuring trust. And likelihood to participate in clinical research through surveys and AI tools, which is very much so connected to that previous point around qualitative measures and understanding the why and the how behind the what. Now, Kathy, you didn't ask about supporting site success, but you actually led that group. Mm-hmm. And considering your, the audience for this podcast, I want, I do wanna highlight the output there because I think it's really powerful and important that that was one of the four breakouts that we had in my experience thus far. There's a disconnect often between what teams like ours at Jumo Health are doing, what community or advocacy teams might be doing in a market, and then what the site teams are doing to drive engagement and recruitment and connecting those dots. What we identified was really helpful in the moment in that room, and then b, coming out of the best practices really strongly applicable for this conversation. I believe the first being community. Echoing what I just said, consult sites. Our teams need to be in community with all of you and vice versa. We need to be consulting each other and teams need to be consulting their sites on what they're doing from a community engagement effort early. We need to be sharing data and insights to identify areas of need and customized solutions that are supportive versus duplicative or competitive. Number two, creating more flexibility in protocols and community engagement plans and site planning to build localized strategies that drive patient centricity. Kathy, I'm sure you can speak to these much better than I can, but this was really powerful in thinking about, to your point, the need to customize and personalize not only the communications, but also our tactical approach. And then lastly, communicating clearly and often was the final best practice for supporting site success. Just ensuring that in order for us to do one and two, we're facilitating clear communication between our CROs, our sponsors, our sites, and setting clear expectations so that we're avoiding false assumptions. And so that's where we net out. It's a lot to take in, but really powerful and I believe actionable stuff that the more we can sort of water the seed of this thinking, the more we can start to operationalize it across the industry.
Kathy Mickel:Really great summary, Kristen, thanks so much for the opportunity to collaborate on that with, you and the others that were part of that conversation. I also really appreciate the great summary of all of our efforts in this space of community engagement. One of the things that you talked about was. Trust and spending the time and being in community. That's the piece that we talked about during the panel is that, and you mentioned it here too, is that while we might think of a clinical trial and it's gotta start and it's got a finish and it's got all these different milestones it's very time bound. But building relationships, being in community, is not time bound. It needs to happen well before a trial starts, during the trial, after the trial. And in that sense of community that you talked about, you also are highlighting here, it's the patient advocacy groups, it's the sites, it's the principal investigators, it's the clinical research organizations. It's the sponsors, it's the vendors that support it. But we also need to, pause at times and think about who's not in our community that we might be missing. And that too, again, takes time, flexibility and, some forward thinking. There's great work that you have highlighted. There's great actions, and to your point, they're really relatively easy. We just have to, as an ecosystem, invest the time, the energy, the resources. To do this well, because otherwise we're missing the whole boat and seeing that the patient is a part of the community, that the patient has family that's part of the community. The patient has community leaders that are part of the community. As we're talking about here, what's happening currently in the political environment, in the social environment. What we're also talking about this need to do it now, the sense of urgency around community engagement. How do we make sure that community engagement is not just a trend? How do we make sure that in order for trials to be effectively designed, that community engagement is more lasting and more measurable. I think. Again, you've talked about some of these things, but is there anything else that you'd add to that?
Kristin Tolbert:Yeah, great question and thank you for centering the patient. The patient, the caregiver, the family unit, the people, the persons who are at the core and center of all this need to be at the core and center of our thinking, our planning, and our community building. And more important now, perhaps than ever, especially in a like quote unquote post COVID world Folks are much more aware of clinical trials. Now there's still a long way to go in terms of general awareness, but given the operation warp speed and all of that, it's more in the mass lexicon than ever before. Teams do need to be more conscious firstly of the cultural nuances sensitivities, the increased concerns that some populations may have as it relates to the data privacy and personal safety. And if we're centering that we can anchor in that as an approach. I think that's the first thing that will help community engagement have sustainability, is that their needs are at the center. The next thing is talking about that long path and that investment, like you were saying in terms of time and resources. So the most successful programs that I've seen understand the need to start talking about clinical research in general first, and then engaging sort of in a funnel, right from macro to micro around certain relevant health topics. Before diving into study specific communications or recruitment efforts, it's building relationships with that local site team and ensuring that they are seen as a part of the healthcare ecosystem in that city among this population. It's making sure folks understand what a clinical trial is, and why it should be considered a viable option for them as it relates to their healthcare journey decisions. If we can do that over time, it gives space for awareness, consideration, and trust to build all things that are necessary to your point, to already exist in order for enrollment and adherence to happen. The best programs also stay connected with the community after recruitment efforts are done. They remain connected as partners, continuing to understand those unmet needs, addressing the public health issues or disparities that we identified at the start as the public health that's driving. In the first place. And we can do that through partnership with sites that are embedded in these communities and those organizations that are trusted voices to really craft solutions to keep getting smarter and to receive feedback when something isn't necessarily working as desired or a need is remaining unmet.
Kathy Mickel:Wow, Kristen. That's really great. I was going to ask you, what's the call to action? And you actually just shared a whole bunch of steps around that. I wrote down here, increased awareness, just understanding kind of how people fit into this whole. What's their part in community engagement? And then you broke down so beautifully. Educate, engage, build relationships, stay connected and, the mindset of partnering. Community engagement is not just a unidirectional thing. It's a partnership. With that Kristen, I wanna thank you so much for sharing your insight, your experience, and your passion with us today. Your voice continues to challenge and guide this industry towards more inclusive and patient-centered research. And to everyone listening, if we're committed to good science and strong data, we must be equally committed to reaching all patients and supporting the sites that serve them. I encourage you to get involved and continue the conversation by joining us at the upcoming Global Site Solutions Summit. That's happening September 28th to October 1st in Orlando, Florida. You can register for that at my SCRs org. And while you're there. Explore other SCRS resources and our INCLUDE program from our publications to our vibrant site community. Thanks for tuning into SCRS Talks. Thanks, Kristen. We appreciate your participation and look forward to bringing you more great content soon.
