The Measurable Value of Patient Voice in Trials

What makes patient voice sessions the most impactful part of every SCRS summit? Jade Tuttle from Syneos Health breaks down what she learned from featuring patients at four summits in 2025. The recurring theme? There are still massive gaps in our systems, but sites that adapt proactively and deliver emotionally intelligent trials create transformative patient experiences. Jade shares standout stories, explains why regulatory bodies are increasingly mandating patient-centric practices, and reveals the measurable business case for patient-informed trials. She challenges the industry to move beyond reactive approaches and partner with patient advocacy organizations early in trial design. Learn how to turn "patient-centricity" from a buzzword into real, tangible practice. 

Transcript

Lauren Stockwell 0:00

Welcome to SCRS talks provided by Society for Clinical Research Sites. Thank you for joining us as we explore the latest insights, trends, and innovations shaping the clinical research industry today. My name is Lauren Stockwell, and I'm the Education and Engagement Manager with SCRS. I'm excited To be joined today by Jade Tuttle, director of Advocacy and Patient Affairs with Syneos Health. We are so excited to explore all the trends and things that happened in those sessions to really understand how incorporating the patient voice is so critical to our site success. So let's kick things off. First and foremost, Jade, why don't you introduce yourself and give us a little bit of background as to why the patient voice means so much to you, along with SynSyneos decision to support bringing the patients directly to these conferences.

 Jade Tuttle 0:47

Thanks Lauren, and thanks for the opportunity to come on this podcast and share with everybody. Yearend recap of the patient voice sponsorship and how we've really been working to elevate the patient experience and perspectives as part of a very critical piece of. Drug and product development. I think I hear this from almost everybody who gives me feedback on these, sessions and summits. But this tends to be the most. Fun and most interesting session of the summits. this is an opportunity for people to hear directly from people who are actively living with conditions and have previously participated in clinical trials, and this is a unique opportunity because. Thinking back on my own experience, when I was a research coordinator at a site myself, there was rarely opportunity to really get to talk to patients about their experiences and to know how we were doing as a site. you're tied up in the day-to-day protocols. you're in that day-to-day delivery trying to check the boxes, get the data. and do everything you need to be doing. So this is such an important session for people, especially our site members, to hear about these experiences As far as Syneos Health's decision to support bringing patients directly to these conferences and supporting this patient voice session, this is tied to Syneos Health's commitment to ensuring that patient perspectives shape every stage of decision making across the product development journey. Elevating patient voices connects the science with the realities and lived experiences of the people who will eventually be. Needing to access and use these products So it's really important that the people who will eventually be accessing or needing to use these therapies have a seat at all of the right tables. one space where we tend to see this disconnect is, where sites. Patients and care partners can connect together on that common ground outside of that study visit setting. in my previous experience as a coordinator, you have that opportunity at the site level to engage with patients, hear their experience, their feedback, and understand how we can be improving our day-to-day practices to make the trial experience much more enjoyable. it's also important that's. Sponsors and CROs in the room hear directly from the source of what is and isn't working in our approaches. most of us who work within the sponsor and CRO, level of things we're very far removed from the day to day interactions. So this is a unique opportunity to bring patient voice into the rooms where these very important stakeholders and decision makers are present and can hear directly from, that source what's working.

Lauren Stockwell 3:40

Yeah, a hundred percent. And I think that is such an important point to make, to really allow us to pull back the curtain a little bit and help everybody in the room to not only see what's working well, but also what we need to think about changing and how we can. Better serve that end user at the end of the day these patients are the ones that matter and are giving their time, energy, resources, body, everything to these clinical trials to ensure that this medicine is effective and safe. we really appreciate the partnership and we've loved getting to work with you on it. I'm curious, looking back over 2025 and being reflective from the Global Summit, the European Summit. The ANZ summit, the West Summits. what were some recurring themes or challenges that you saw in each of these stories? I know you and I both had a really intimate hand inside building out those conversations. Were there any perspectives that changed the conversation or things that kept coming up, any particular sessions where having a patient in the room really made that visible difference.

Speaker 3 4:42

that is such a great question, Lauren, and I think it's a really important one because although every person who we heard from their stories were so unique and so incredibly different in their own way. there was one recurring theme that stood out to me personally. What tied these stories together is the realization that there are still so many gaps in our systems. all of our guest speakers offered perspectives that tapped into different elements of how the current infrastructure, and our ways of operating in this industry still need a lot of improvement. Patient centricity, requires more than just good intentions. It requires very thoughtful and proactive design and planning. some of the most significant stories that had the deepest impact for our audiences were those of site adaptability and sites that were able to deliver emotionally intelligent, empathic, and understanding trials that really met these patients where they were, despite the complexity of the protocol Despite challenges in the patient's personal, life that may have made their participation more complicated. There were instances where sites really took that extra step to adapt in any way they could without deviating from the protocol or compromising data quality, to ensure that the person, felt included, felt that their experience and participation was meaningful. And I think that reveals a lot about what we could be doing as an industry to support our sites as much as possible, to ensure that they're prepared, that they have the resources, training and confidence to deliver these types of trials. that may, deliver a more enhanced experience for these individuals. one story that really stood out for me was, Michelle's story at the ANZ summit. she is an individual who, for those who may not have heard her story, she's living with, a disability. She lives with vision loss. although she was participating in a trial unrelated to her vision loss. an oncology trial. The site took extra steps to help her successfully participate in certain assessments being administered. That hadn't quite taken into account the fact that individuals with vision loss. may not be able to complete the protocol, the same as those who are not experiencing vision loss. to ensure her, fairness equal participation and a positive experience, this site took extra steps to ensure they could improve that. Experience. that was a standout moment, for me when hearing her story. and a perfect example of how a site can make small changes that go a really, far ways to improve a person's experience in a trial and leave them with a positive outcome.

Lauren Stockwell 7:42

Yeah, I appreciated that story so much. it was a beautiful example about somebody taking the term patient-centricity to the next level, right? We can all screen from the rooftops. We're patient-centric, but until we functionally implement processes procedures and give resources to that word, it's just a word. I think it's critical that everybody listening think about Processes and say, how are we remaining patient centric? How are we remaining site centric? Which therefore is patient centric. that's something we would like to challenge, moving forward to the actual regulations behind this. You know, we're seeing a lot of regulatory bodies. Increasingly mandate these patient-centric practices, How have you seen these regulatory changes intersect with what you're observing at these events and in these sessions and in these stories? Are regulations catching up to what we're just doing naturally because it's the right thing to do or are they driving any new behaviors?

 Jade Tuttle 8:36

So I think that the regulatory momentum is showing up in the form of curiosity and increased interest. Three or five years ago where, you know, true engagement practices, true thinking around how to accommodate and design trials that are actually inclusive of patients' needs or care partner needs. I'm seeing a lot more curiosity and Dialogue around creative thinking and how to push that needle forward so we can shape science designed with the patient and care partner in mind. I think more evidence to this is seen in the fact that we're, seeing more partnerships between industry sponsors. And advocacy organizations. We're seeing this evolving landscape of investment, not just in, you know, money, but also the time and the resourcing and the planning to support these advocacy organizations and their ability to educate their communities, These communities see them as a, a very trusted resource. Right. Especially when we're talking something like rare disease. these, these advocacy organizations provide, you know, a safe place, a very, a very resourceful and supportive place for the patients, the families, the care partners who are experiencing, you know, these day-to-day challenges as part of their condition or disease that they're. Facing this is where they go. It's really neat to see how many sponsors and industry stakeholders are beginning to recognize the value of our patient advocacy organizations as partners and not just as conduits to advertise trial information.

Lauren Stockwell 10:37

And that's huge. And if we have the right partners. to move this process forward. that's how we're gonna actually achieve, right? We cannot go anywhere alone. David Vulcano constantly says nothing about us without us, and he's referring to sites when he says it. But I also think it translates well to the patient advocacy place and patient advocacy organizations do a really good job of representing that patient voice. as we look towards 2026, and as you and I work to plan the 2026 summit cycle with these patient voices and beyond 2026, what is your call to action to the clinical research community and how do we take really tangible insights from having these patients at the table and translate them into a sustained industry-wide change?

Speaker 3 11:21

I, have my own personal, thoughts just based on my own experiences, my own interactions. But I think I'm gonna do this one justice by first leaning in with some actual measurable data that's out there that really justifies the need to have this call to action. there is true demonstrated value, supported again by measurable data that shows the value of early engagement and patient informed trials. We have evidence to show that when trials are designed with and for patients, these trials recruit faster, they have fewer protocol amendments and they see greater cost reductions overall. So this isn't just. something that seems like the right thing to do. There's actually. very strong, business drivers out there for those who might need more of those types of evidence, there's a lot of strong evidence out there to support this as well. as the more, qualitative. Cases such as the evidence that we hear through these patient, voice sessions. we hear from them and our guest speakers the importance of, having centered, customized experience, especially the interactions with site staff, Seeing oneself in the staff who have been hired to run these trials, is there a sense of similar identity or shared identity? Can this person, feel comfortable in expressing their culture or their native or preferred language during their visits? All of these things then lead when we make people feel more included, when we're delivering more patient-centric trials, that were truly informed by the community. We get better data, we get better outcomes. We see, these experiences translating through the community. people talk to one another. These patient communities especially talk to one another and one positive experience could generate. Future referrals for a similar trial. So keeping those things in mind, the call to action is to think about where those touch points are when it comes to integrating patient perspective and patient voice into research and product development. Really starting early. Don't wait until that phase three trial. Don't wait until your study is already falling behind in recruitment and don't wait until commercialization. What are ways that we can get these patients involved? Get these care partners involved and hear from them directly so that we can make sure that we don't reach these points of, reactiveness, right? we've designed it from the get go to really be fitting for patients and for those out there who might be struggling with, okay, well, I get the importance, I get the value, I see the reason why, but I don't know where to start. Remember, advocacy organizations are out there as a guiding star. They are eager to work with, members of our industry, with sponsors, because they're here to educate. They're here to promote, they're here to support the research that will benefit their own communities. always look to advocacy organizations as true partners in this experience. they serve as a great guiding star to help you get your feet grounded and looking towards the right direction.

Lauren Stockwell 14:55

Those are some excellent challenges to our industry as well. and a big key theme that I wanna bring back up to the surface is the proactive versus reactive. And I think that that's something that. Each and every single one of our patient voice speakers constantly speaks about how their site, organization, or sponsor leaned into that proactivity. when there's a positive experience, it's because of somebody being proactive. So continue to seek that proactivity. I wanna thank everybody for joining us once again, Specifically thank the clinical research patients. Anybody who's listening in the room that serves as a clinical research patient or has served as a clinical research patient. I wanna thank Jade Tuttle, the Director of Advocacy and Patient Affairs with Syneos Health for helping us bring these incredible stories to the stage, We're so grateful for your advocacy and your partnership in that Jade.

Speaker 3 15:46

Thank you so much Lauren and thank you SCRS again for really working with us and allowing us to partner with you all on this patient voice opportunity. Looking forward to see where 2026 takes us.

Lauren Stockwell 15:58

Yes, and for everyone listening, please be sure to join us for our very first opportunity to hear another patient voice speaker. at the 2026 European Summit this upcoming March 2nd through third in Amsterdam, Netherlands. Please feel free to visit sitesolutionssummit.com to save your seat. Thank you.