Patients As Partners in Clinical Research Community News

Patient engagement royalty everyone! Two women who bring patients into the C suite every single day took the stage at #PatientsAsPartners2025: Stacy Hurt ??and Liselotte Hyveled ??. I’m inspired by the passion and determination they have for integrating patients into everything their companies do. Both talked about the ways in which the employees in their organizations walk the talk. They also shared ways in which they bridge the divide between patient engagement and clinical operations. Important to make sure everyone has access to the insights from patients’ lived experience. Liselotte talked about a VR experience that allows study managers to literally walk in the shoes of patients. How cool is that! Stacy said that the very first thing they do is find a patient or advocacy group. Patient engagement is NOT a rescue strategy! It is a proactive approach. Bringing multiple parts of the organization into alignment around patient centrality is a long journey, a huge change management ambition. It starts at the top. Stacy repeated a quote from earlier in the conference, “If you don’t have a seat at the table, bring a folding chair.” “Patient Opinion Leaders!” POLs with equal weight to KOLs! Love it! In the dream future they describe, every organization—CRO, sponsor, site—has a Chief Patient Officer!

Kicking off the final day of the #PatientsasPartners2025 conference in Boston with my One2Treat colleagues Sébastien and Jean-Christophe. It's been my first time attending this conference, and I've been genuinely impressed the meaningful connections with like-minded individuals from across the industry—all committed to placing patients at the center of clinical research. Thanks to everyone who made these insightful exchanges possible. A recurring theme resonating strongly with me is the importance of concretely engaging patients from the earliest stages of trial design. Let’s keep this momentum going ! #PatientEngagement #PatientCentricity #ClinicalResearch

Where do I begin? Well, as Stacy Hurt ?? so perfectly says, “Always lead with gratitude.” I am incredibly thankful for the informative presentations, the direct feedback from patients and caregivers, and the engaging conversations that sparked during the sessions. #PatientsasPartners2025 never fails to deliver! From the start of Day 2 until the very end, the presentations left a lasting impression. As Anthony Yanni said, “We are all in this dugout together!” It’s a reminder that we must continue to challenge the status quo—not just solve today’s problems but anticipate tomorrow’s. It’s about shifting our mindset, embracing innovation, and taking risks while learning from the data behind us. At Datacubed Health, our #DreamTeam thrives on pushing boundaries and thinking beyond the present. We’ve come this far with the mindset of “We WILL build this” rather than “We SHOULD build this.” Being proactive and listening to real-life feedback from participants, caregivers, and families is how we stay ahead of the curve. We must continue amplifying the voice of the patient to truly make the difference this industry needs. As Heather Pin, ITIL wisely puts it, “Metrics are fun—let’s use them to better our patients’ experiences!” My challenge and call to action for my community: take more risks. Understand the bigger picture of how we can collectively shift the negative perception of our industry. “Start small, but never compromise your brand,” as Dr. Yanni says. A huge thank you to our patients, who are our true partners. I’m excited for what’s in store for the next conference and for the meaningful difference we’re continuing to make together! Safe travels home everyone!! #togetherwearestronger #eCOA #PatientEngagement #Patientsfirst Natasha Massias Kyle Hogan Ebony Dashiell-Aje, PhD April Lewis Angi Gillen Christie Fry Dr. Anthony K. Taylor DHSc, MSPharm, PMP Lindsay Hedley Beth Moody Joshua W. Michelle Everill Jenn Curry Vanessa Boulanger ???????? Ellyn Getz, MPH Kevin Hudziak Aaron J. Horowitz Joel Schwartz Lindsey Thalheimer Angela Bilkhu Caroline E. Jones, MBA, PCC Eric Nier Paul Diercksen Devin MaGrann Irene Mantikas Niambi Blodgett Oshrat Goldberg Emily Valeo Savine DaCosta

Wrapping up an incredible few days at #PatientsasPartners2025 and I want to thank Kate Woda and team for another very well-run event with a fantastic lineup of insightful speakers. The energy, discussions, and shared commitment to improving patient engagement were truly inspiring. A few standout moments that left a lasting impression on me: Caregiver Keynote- Justin Hopkin shared his family's journey after his son was diagnosed with ASMD. Their challenges, including moving across the country to participate in a trial, highlighted the immense sacrifices families make. He also reminded us that we often overlook the impact on siblings, an essential, yet underrepresented perspective in patient engagement. Ask the Patients Panel- Patient advocates Catherine A., Oronica Fields, Jon Nelson, Sharon Rivera Sanchez provided powerful insights on trial participation. A simple but profound takeaway: truly knowing patients as individuals, down to calling them by first name, can make all the difference. Keynote- Ify Osunkwo, MD, MPH challenged us to rethink how we approach insights. Instead of starting with KOLs, why not begin with advocacy groups, patients, and frontline HCPs, those who are closest to the experience, and then engage KOLs. A simple but impactful shift. Interactive Patient Experience Session-Gauri Narayan, MBA and Monique (Verrier) Mulkern guided the audience through the LEAP framework, putting us directly in a patient's shoes. A powerful exercise that reinforced the importance of designing real-world patient experiences in mind. Memorable quote- "I get better empathy from GPT than I do my neurologist." A stark reminder of how far we still have to go to ensure patients feel valued and heard. Keynote- Anthony Yanni left us all inspired and reminded us that "if you are in the room you are in the game" and that we all need to continue stepping up to drive change. Panel on Incorporating Patient Input- led by Joseph K.with Mackenzie Abramson, MPH, Michelle Everill, and Jessica Perry emphasized the core principle: always seek patient input, and always bring in diverse perspectives. I'm leaving the conference energized and ready to take on new and familiar challenges with renewed purpose. Onward and upward in our shared mission to improve the patient experience and drive better outcomes! #PatientsasPartners2025 #PatientEngagement #ClinicalTrials #PatientVoice

It’s been an inspiring couple of days! The message is loud and clear. Patient engagement is not a rescue strategy - we have to engage early and often to have real impact. Looking forward to sharing more!

?? Loved the opportunity to share views with fellow #chiefpatientofficer on stage Key take away messages from #patientsaspartners2025 ??Patient voice must be embedded in the organisation, and not just embraced in corporate values ??the culture of embedded patient voice is a shared responsibility across stakeholders ?? Co-creation with patients over consultation ?? Patience over perfection - its takes time to drive a transformation ?? Obtaining patient insights is not about introducing more complexity- its about understanding the true needs and making these insights drive the decisions to ensure better and more successful treatment offerings ??Invite patients into key discussions and decisions Sucess comes when patient insight drives decisions Stacy Hurt ?? Patients As Partners in Clinical Research Community News Ify Osunkwo, MD, MPH #CPO #patientopinionleaders #POL #advisoryboard #PED #patientexperience

Had an exciting day 2 at #patientsaspartners2025 sharing how we are helping patients find relevant clinical trials with our AI enhanced solutions. Look forward to another day of sharing and learning. https://lnkd.in/g_ZFFGMw #patientengagement #AIinclinicaltrials #clinicaltrials #clinicalresearch #patientrecruitment #remotedatacollection #patientsaspartners Patients As Partners in Clinical Research Community News

AdvaMed member company Medtronic representative and frequent Patient Experience Initiative contributor Korinne Jew is one of the most authentic and patient-focused MedTech champions I know!

As I wrap up the final day at the #PatientsasPartners2025 conference, I'm invigorated by the profound discussions that have taken place. The emphasis on shifting from transactional patient engagements to strategic, long-term collaborations resonates deeply with me. It's evident that investing in patients as true partners is not just a conference theme but a necessary paradigm shift in our industry. However, challenges persist, including capacity constraints, lack of internal champions, and unclear ROI. Addressing these requires finding and nurturing champions within our organisations and constructively challenging resistance. Notably, there's a concerning trend of champion turnover due to burnout when impacts aren't immediately visible. To counter this, we must ensure that our patient engagement strategies are sustainable and supported at all levels. Flexibility in trial design is also essential. Recognising that a one-size-fits-all approach is inadequate, we need to customise trials based on specific therapeutic areas and patient population needs. This adaptability not only enhances patient satisfaction but also improves the quality of data collected. Reflecting on these insights, I'm committed to advocating for authentic patient-centric practices and fostering environments where strategic collaborations thrive. By doing so, we can drive meaningful advancements in clinical research and ultimately improve the health and wealth of the nation. #PatientsAsPartners #PatientEngagement #ClinicalResearch #PatientCentricity #HealthcareInnovation #ClinicalTrials #ResearchAdvocacy #StrategicCollaboration

As #PatientsasPartners2025 closes out, I am left with a mix of emotions. Great meet-ups with friends old and new, inspiring talks from so many industry and patient experts, and a rousing call for including patients early and often in the clinical trial process. Listening to Chief Patient Officers, Stacy Hurt ?? and Liselotte Hyveled ?? discussing their "whys" and how they fight to ensure the patient voice is included, I was still a little sad. Rare Patient Voice has been coming to this conference for many years and every year we hear the same rallying cry to include patients. When Stacy said "patient engagement is not a rescue strategy" my heart sunk, because I know it is in so many cases and should not be. Let's not let another year go by just to find that only 26% of Phase II and III trials involve Patient Advisory Boards or a mere 48% provide Plain Language Summaries. These numbers are downright depressing and we can do better. Stacy noted that involving patients at the outset of trial design is far less costly than the cost of not being able to fully enroll or retain patients because the trial was not designed in collaboration with patients. Patients want to share their voices and their expertise so, as Nike used to say "Just do it!"