PFMD

When clinical trials only capture a narrow slice of the population, the consequences are real, and widespread. This is a system problem AND a science problem and Amanda Bok shares below some of the global and EU-based efforts that are addressing these challenges head-on! IHI READI PFMD

🔹 Opportunities for meaningful #patientengagement are often overlooked —more than we realize. A promising treatment is developed, but patient insights come too late. A #clinicaltrial struggles with recruitment because trust wasn’t built from the start. A #patient’s voice is heard but doesn’t shape the decisions that matter most. 💡 Without the right training, #PatientEngagement risks being tokenistic —costly, ineffective, and frustrating. ⛔ It doesn’t have to be this way. #PatientEngagement doesn’t have to be complicated — small actions can drive real, lasting impact. ➡️ 🟢 With the right approach, it fuels #innovation, builds trust, and leads to better health outcomes. That’s where #PFMD’s accredited #PatientEngagement Training comes in. The resource gives you a structured, step-by-step approach to integrate engagement into your work. Start here: https://lnkd.in/eEmj5_wM 💬 Who is it for? From R&D specialists to compliance experts, patients to sales teams to HR leaders. ⏳ No time? Learn at your own pace with interactive content, bite-sized modules, and a certification upon completion. ⁉️ Why does it matter? ✅ Better outcomes in medicine and device development ✅ Now an industry standard, not an afterthought ✅ Drives success across R&D, regulatory, and commercial strategies This #co-created program equips you with the methods, insights, and real-world strategies to make patient engagement meaningful. Because the gap between intention and impact in patient engagement is one we can bridge—starting now. #PatientEngagement #MedTech #Pharma #PFMD #Healthinnovation #MedicinesDevelopment #Cocreation Hayley Chapman | Nicholas Brooke | Emilie Luciani | Maria Marano | Maddalena Benivento

The #Patient Engagement and #Patient Experience Data (PE & PED) Project has made serious strides in turning patient experiences into meaningful change. Be a part of our next session, where we will focus on collectively setting the path for the #PE & #PED project in 2025. 🗓 April 16, 2025 ⏰ 16:00–17:30 CET  👉 Register now: https://lnkd.in/erRsQeeV 💡 What to expect: - A look back at our collective impact in 2024                               - A chance to shape the PE & PED Project direction for 2025                    - Practical insights to embed PE and PED into real-world decision-making 🎤Featuring our speakers here: Neil Bertelsen (Health Technology Assessment international (HTAi)), Nikul Bakshi (Parkinson's UK), Angela Bilkhu (Roche), and Hayley Chapman (PFMD, The Synergist.org). Let’s chart the future of patient engagement — together. #PFMD #PatientEngagement #PatientExperienceData #PatientHealth #CoCreation #GlobalHealth #Cocreation

🔶 Patient Engagement in TB: A Necessity, Not an Exception 💡 “Nothing about us without us” holds true for TB, too. On World Tuberculosis Day, we must remember that tackling #TB requires more than science. The #WHO’s 2018 guidance on community and patient engagement in TB care underscored a crucial truth: a patient-centered approach must be built on respect, transparency, and dignity—with real attention to people’s values and needs. This isn’t just best practice; it’s the foundation for real impact. When patients are meaningfully engaged, they don’t just exercise their rights - they actively shape better health outcomes for all. At PFMD, we believe this shouldn’t be the exception but the norm across all areas of healthcare. Our work provides the resources, frameworks, and community to turn good intentions into meaningful collaboration. As we push forward in the fight against TB and other global health challenges: 🤝 Partner better. 📢 Amplify the voices that have too often been left out. Join us in making patient engagement the standard, not the afterthought: https://bit.ly/4iA1pti #EndTB #PatientEngagement #PublicHealth #HealthEquity #PFMD #NothingAboutUsWithoutUs #WHO Hayley Chapman Nicholas Brooke European Patients' Forum World Health Organization Infectious Disease Alliance London School of Hygiene and Tropical Medicine, U. of London Institute of Tropical Medicine Antwerp Stop TB Partnership Médecins Sans Frontières (MSF) TB Alliance PATH

How can we make patient engagement (PE) more impactful in clinical trials ⁉️ Join us for an insightful #PEOF virtual session tomorrow. Global experts from Europe and Japan will explore where #PE is thriving, where it’s falling short, and how we can co-create a better approach. 🗓️ March 25, 2025 ⏰ 12:00 to 13:30 CET / 20:00 to 21:30 JST 👉 Register now: https://bit.ly/4bwttuQ We have a fantastic line-up of speakers: Laureline Gatellier (National Cancer Center Japan), TEZUKA SHUN (PMDA), Carolyn Taylor (Global Focus on Cancer), Maria Mavris (European Medicines Agency), Jan Geissler (Patvocates), and Hiromi Kawamura (Shizuoka Prefecture). 💡 If you’re a patient, researcher, or policymaker, this session is for you! Join the discussion and help shape the future of patient engagement in clinical research. #PatientEngagement #ClinicalTrials #POEF #CoCreation

Year after year, The Conference Forum impresses me with how skillfully they keep the patient engagement conversation moving forward—while spotlighting the next wave of innovation. From the enduring focus on returning individual and aggregate trial results to participants, to urging the industry to do more to meet the needs of trial participants, this year's agenda hit the mark again. I was especially energized by: Hayley Chapman's update on PFMD's work in Patient Engagement (PE) and Patient Experience Data (PED)—including the Navigator tool, we've been working on together with a multi-stakeholder group, helping bring patient insights into the hands of decision-makers from early development through patient care. Ken Getz's keynote demonstrating the value of patient engagement to sponsor organizations- especially the impact of advisory boards on improving trial efficiency and cycle times. In my experience, industry colleagues are very interested in what this data shows! Amanda Beasley, PhD (she/her) and Willyanne DeCormier Plosky kept us highly engaged during their panel discussion as they shared proven approaches for sustained long-term success in community engagement and ensuring representation in clinical trials. Side note: Willyanne's workgroup leadership at the Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard (MRCT Center) continues to make important progress in this area as does Jennifer E. Miller at Bioethics International. Truly groundbreaking and inspiring work that continues to build an important foundation for all of us. Anthony Yanni's Zeitgeist presentation demonstrating how integrating patients' needs to drive market success can be your competitive advantage while benefiting patient outcomes and your bottom line. Barry Liden’s call to action on patient preference studies reminds us how impactful this type of Patient Experience Data is becoming at the EMA and FDA CDRH. This year, I was particularly excited to learn about something entirely new!! Sebastian Bach, CEO of One2Treat brings us an innovative stats model with advanced software solutions. We discussed a particular use case that allows for integrating patient preferences into primary endpoints. This novel methodology may present a highly efficient mechanism for assessing and including patient preferences that can inform regulatory decision-making. Think about this: 20 minutes of insights gathering during a Patient Advisory Board could inform regulators of patient preferences by integrating these insights into the primary endpoint. Two FDA presenters well-known in this space joined us on Day 3 of the conference. We saw no signs of decreasing enthusiasm about Patient Engagement and PFDD! So—what do you think? Could this help us move the needle on PFDD beyond PRO's? #PatientEngagement #ClinicalTrials #PatientExperience #PE #PED #PatientCentricity #RegulatoryScience #One2treat #PFMD #ConferenceForum #PatientasPartners2025

🌍✨ Investors focusing on Patient Engagement - A Historical Moment! ✨🌍   Yesterday, as part of the third Life Sciences Impact Day, Gilde Healthcare hosted a first-of-a-kind meeting to discuss the need for patient engagement by the investment community.   A huge thank you to Patients Focused Medicine Development (PFMD), a global leader in patient engagement for leading an insightful session – this was the first event where patient engagement was discussed in a meeting with over 25 investor representatives, including the who’s who of European specialists. This marks a significant milestone in driving the adoption of patient engagement by investors.   Other topics that were discussed included an engaging discussion on various impact topics, hosted by Forbion and a fascinating presentation of the LIFE framework, brought to us by Invest-NL, Coöperatie VGZ, and Ansana, organized by NLC Health Ventures.   For anyone curious about Gilde Healthcare's commitment to patient engagement, we encourage you to dive into our whitepaper. It outlines our rationale and vision for embedding patient engagement as an integral part of our investment strategy. It also provides further information on our Impact Council members, who have been instrumental in this effort.   A special thanks to Forbion and NLC Health Ventures for co-organizing the Impact day, and to all the participants for attending and making it a huge success! 🙏 Dr. Stephanie Mooij Johanneke Maenhout Silva Deželan, PhD Joep Muijrers Vincent Raske Nicholas Brooke #bettercareatlowercost #patientengagement

Empowering investors towards healthcare impact with collaborative spirit! – Nicholas Brooke on behalf of PFMD and building on The Synergist.org ‘s vision to make people-centric collective action the new normal, sparked investors’ drive to take their next step: connect with and leverage the patient community for better health outcomes! Clearly, the willingness is there and the challenges that remain to build bridges between the investment and patient communities seem small when addressed together 🚀 It’s exciting to see first-hand how #patientengagement is breaking yet another boundary and unlocking healthcare value with investors. With many thanks to Dr. Stephanie Mooij & Joep Muijrers who are among the early adopters leading the charge for #patientengagement in their community, invited us and brought together a curious, motivated, and impact-seeking group at the Life Sciences Impact Day for Investors hosted by Gilde Healthcare; Let’s go 💪

👇 Like many of you I have attended LOADS of conferences, seminars & workshops - a fair share of which I organised myself - and none of them come even close to the dynamism, collaboration-tangibly-in-action and spirit-of-moving-something-together as PEOF👇 If you haven't yet attended one, you're really missing out. The future is - needs to be -must emphatically be - collaborative. Join us 💪 together we can shape the future we need. PFMD European Patients' Forum EUPATI The Synergist.org

Most events follow the same formula: a stage, a panel of experts, an audience pretending to take notes while secretly checking emails. Maybe a short Q&A at the end, just to give the illusion that those attendees have some say. Then everyone leaves, and the real work still needs to happen elsewhere. But lately, I’ve been thinking, why do we keep doing this? Why are so many events structured like one-way broadcasts when the best conversations (and let’s be honest, the real decisions) happen in the hallway, over coffee, or when people actually sit down and work through things together? What’s taking shape with Patient Engagement Open Forum (PEOF) feels different. It’s not just another healthcare conference, it’s a space where patients, industry, regulators, healthcare pros, caregivers, researchers don’t just listen to ideas; they build on them together. It’s a forum (like an actual forum, like it says in the name) where different perspectives meet, challenge each other, and figure things out, not later, not in follow-up emails, but right there, in real-time. Watching it come together behind the scenes, I see the effort it takes to make this more than just a stage and an audience. It’s a working space, a problem-solving lab, a collaboration hub where things actually move forward. The work isn’t happening before or after, it’s happening in the room, with the people who can actually drive change. See you 10th-12th June in Italy. PFMD | European Patients' Forum | EUPATI https://lnkd.in/eYwGvYEC https://lnkd.in/eg8hMuxw