Patients As Partners in Clinical Research Community News

Our team had a fantastic time at the 12th annual Patients as Partners in Clinical Research conference this week. They were delighted to hear insightful keynotes and participate in interactive sessions focusing on breaking down barriers to improve patient retention in clinical trials. Our CCO, Scott Dixon, shared his thoughts on the event: "Reflecting on the Patients as Partners conference this week in Boston - it hits home on not just using the buzzwords of “Patient Centricity” but truly ensuring we, as an industry, continue to consider the patient and caregiver journeys. We must also take into account the site impact as we design our protocols. The impact these protocols have on patients, as they consider entering and staying in a given trial, is crucial. Ken Getz's keynote reviewed data that drove this point home. This is why I am inspired to be part of mdgroup." #PatientsAsPartners2025 #ClinicalResearch #ClinicalTrials #PatientCare The Conference Forum Patients As Partners in Clinical Research Community News

This was such an awesome full circle moment and a great example of this week's conference living up to its name! #PatientsAsPartners2025

What an incredible experience it was to moderate a keynote discussion at #PatientsasPartners2025, alongside physician and rare disease patient advocate, Justin Hopkin, MD. ? During the powerful conversation, Justin shared the remarkable journey of his son, Garrett. After being diagnosed with acid sphingomyelinase deficiency (ASMD) as an infant and given a heartbreaking prognosis, Garrett’s participation in a clinical trial became a turning point for him and his family. ? His story is a testament to the importance of clinical trials and I’m grateful to have had the opportunity to facilitate this conversation and to continue advocating for inclusive and accessible clinical research. ? #MerckProud #ClinicalResearch #ClinicalTrials #PatientCare

?? Just wrapped up my third Patients as Partners! ?? So many inspiring conversations with patient advocates, researchers, and industry leaders who aren’t just talking about change but actively working to embed the patient voice at every stage. ?? Left with plenty of ideas and a renewed drive to keep pushing for more inclusive, accessible clinical trials. Met with some old friends and made some anew! Excited for what’s ahead. Let’s keep the momentum going! Patients As Partners in Clinical Research Community News ProofPilot #patientsaspartners #patientsaspartners2025

I recently had the opportunity to speak as a panelist at the FasterCures at #Patients as Partners in Clinical Research event, where we discussed how patients, payers, and Centers for Medicare & Medicaid Services can work together to help expand access to innovative therapies and technologies. CMS values the input of the general public in its coverage decision making, but oftentimes the patient voice is underestimated as a powerful advocacy tool for change in the reimbursement and access space through meetings and importantly, comments on regulations and requests for information. It is important for patients and patient advocates to understand the processes at CMS for engagement and?partner with the agency?to ensure CMS is making intentional coverage decisions for technologies that are reasonable and necessary to improve the health of the patients who need them. Thank you to my fellow panelists June Cha, PhD, MPH and Campbell Hutton for the engaging discussion.#PatientsAsPartners2025 #CMS #Medicare #PatientAccess

Attending #PatientsAsPartners2025 was an incredible learning experience. It’s great to be part of company that is so focused on engaging patients and making their voice heard throughout the entire clinical trial process.

Was lucky enough to attend the #PatientsAsPartners2025 conference in Boston this week! Amazing to meet so many people united by a passion to champion the patient voice in life science, sharing their ideas, solutions and challenges. Even better was the opportunity to hear from patient advocates sharing their experiences of clinical trials, what helped them and how they could be improved. At Little Journey we specialise in supporting families who undertake paediatric clinical trials. I had some great conversations at the conference and will be following up over the next week (once I have recovered from the jet lag!). If we didn't get a chance to chat and you would like to hear more, scan the QR code in the image below to get some info about what we do and feel free to drop me a message on here or at [email protected].

Reflecting on an Inspiring Experience at the Patients as Partners Conference I had the privilege of attending the Patients as Partners in Clinical Research Conference this week, where I joined key leaders in the industry to discuss best practices and lessons learned in advancing diversity in clinical trials. My key takeaway is that this work continues to be a scientific imperative to ensure safety and effectiveness for ALL patients. While the journey may not always be easy, our efforts and passion are stronger than ever. Thank you to my fellow panelists for sharing their expertise and insights in this important discussion (Amanda Beasley, PhD (she/her) Kristin Tolbert Willyanne DeCormier Plosky AnneMarie Winkler). Overall, this was a fantastic conference, and here are my key takeaways from three days filled with positive energy and meaningful discussions: ? Passion and Energy:?There is a lot of enthusiasm to ensure we are incorporating the patient voice, not just to inform decisions, but to DRIVE them. ? Demonstrating Value:?We are continuously asked to showcase the value of engaging and listening to patients. To address this, we need to collaborate across the industry to share experiences and data. ? Re-thinking Incentives:?We need to rethink the incentives within our organizations to drive progress in incorporating patient input effectively. Thank you to all attendees for the engaging discussions and shared commitment to advancing patient engagement in clinical research. Together, we are making strides towards a more inclusive and effective clinical trial landscape. #PatientsAsPartners2025 #ClinicalTrials #DiversityInClinicalTrials #PatientEngagement #HealthcareInnovation

I’m finally settling back home after an incredible few days in Boston attending #PatientsAsPartners2025 earlier this week. So many great moments… ?? Day One Co-Chairs Advocate Rucha Shah and Angela Bilkhu (Roche) set the tone reminding us that, no matter the obstacles we may currently face in this space, we must stay focused on the mission of putting the patient first in all we do. ? I had the honor to moderate a keynote fireside chat with Jayne Gershkowitz from Amicus Therapeutics. She’s not only a star in the Patient Advocacy world, but a personal hero of mine. Jayne was the first to show me, many years ago, that my voice mattered and had value and power. ?? I also had the pleasure to share the stage, alongside Gauri Narayan, MBA and Monique (Verrier) Mulkern, during Alexion Pharmaceuticals, Inc. interactive session highlighting their LEAP program. It allows employees to walk in the shoes of a patient or caregiver during their healthcare journey, giving the employee a wider, clearer perspective. ? I was most humbled by the personal and incredibly powerful stories shared by my fellow patient and caregiver advocates Barry Nelson, Mackenzie Abramson, MPH, Patrick O. Gee, Sr., PhD., JLC, Jon Nelson, Sharon Rivera Sanchez, Catherine A., Justin Hopkin, Sarah Woods, and Oronica Fields. They are truly the experts industry needs to hear from throughout the #DrugDevelopment process...from start to finish. Don't ever underestimate their value and power. ? Actionable strategies were shared by many in the field.... Stacy Hurt ??, Ify Osunkwo, MD, MPH, Ken Getz, Beth Brooks, MPH, LSSBB, June Cha, PhD, MPH, Jen Horonjeff, PhD, Liselotte Hyveled, Anthony Yanni, Emma Sutcliffe, and many more. As always, I’m grateful for the connections, both new and old, I meet with at these conferences and the work they do in this space. To name just a few….Lindsey Wahlstrom, Maya Zlatanova, Vivian Larsen, MBA, Jennifer Ribeiro, Jean Gallagher (National Organization for Rare Disorders) and Lindsay Hedley. ?? A huge shout out to the event organizers Kate Woda, Valerie Bowling, and the rest of the The Conference Forum team.?The energy during those three days was amazing. ?? Now, I'm looking forward to hearing how industry is going to keep the momentum, pushing forward and fighting to have the patient and caregiver voice heard loud and clear. #PatientEngagement #PatientVoice #PatientCentric #RareDisease #FabryDisease #Pharma #Biotech #ClinicalTrials #Accessibility #HealthEquity