EUPATI

📍 Off to Amsterdam! EUPATI will be taking part in World Vaccine Congress Europe, on 19-21 October at the RAI Convention Centre in Amsterdam. Our Executive Director, Maria Dutarte, will join the panel “Vaccine Acceptance: Safety, Communication and Access” on 19 October at 16:00. The discussion will explore how to communicate rare adverse events with context and proportionality, how to explain changes in recommendations without damaging confidence, who does what in vaccine communication across regulators, government, manufacturers and clinicians, and what stands in the way of vaccine uptake at system level. Our EUPATI Open Classroom Coordinator, Laia Bisbal Arnal, will also be there to meet colleagues and partners from the vaccine community. We believe patients’ voices belong in discussions about vaccine research and development, and we’re looking forward to the exchange of ideas. Will you be there? We’d love to say hello. ☕👋 🔗 More about the event: https://bit.ly/4jVF1Oq #WVCEU #EUPATI #PatientInvolvement #Vaccines

Which patients are missing from #ClinicalResearch and how can we better include them? Historically, women have been underrepresented in #ClinicalTrials, as well as elderly people (despite the fact that the people who become sick in real life are likely to be older), certain ethnicities, and people living with disabilities or other difficulties that make it more challenging for them to participate. The European Commission's Horizon Magazine published this article about how the IHI READI project is exploring how to close the gaps and make clinical research more representative and inclusive. 👉 Read it here: https://lnkd.in/eY5AijfG 📽️ Watch the video: https://lnkd.in/eFedqG3J #Representativeness #PatientEngagement #HorizonEU

Patient preferences are evidence. Patient experts make that evidence count. What matters most to patients when choosing a treatment? 💬 Patient Preference Studies (PPS) help answer that question, & patient experts help get it right. At the #EUPATIAGM2026 "Data & Dialogue" event recently in Brussels, Breakout 4 looked at how PPS can bring the patient voice into medicines development, regulatory review & Health Technology Assessment (HTA). A live poll set the scene: more than half of participants were new to PPS. By the end of the session, one message was clear. Trained patient experts are key to making these studies relevant, robust & used. 🔑 Our take-home messages 1️⃣ PPS capture trade-offs, not just experiences. They show which benefits & risks matter most to patients, & the guidance landscape (International Council for Harmonisation (ICH) E22, European Medicines Agency, FDA, PREFER: patient preferences) is maturing fast. 2️⃣ Patient experts improve the science. They shape the research question, wording, recruitment & dissemination. 3️⃣ Involvement must be meaningful, not tokenistic. Clear roles, fair recognition & partnership from the start make the difference. 4️⃣ Evidence should be fit for purpose. It can range from quick preference exercises to regulatory-grade studies, & existing studies should be checked first. 5️⃣ Uptake is the missing link. Patient organisations need decision-makers to commit to using preference evidence. 6️⃣ Education is the top priority. Participants' most urgent needs were PPS methodology, data governance, ethics & evidence-based advocacy. This is where EUPATI comes in. For over a decade, we have equipped patients & patient advocates with the expertise to act as credible, informed partners in medicines research & development. Sessions like this one show why that expertise matters more than ever. 💯 🙏🏻 A huge thank you to our speakers Cecilia Jimenez-Moreno, PhD (Kielo Research), Marie Falahee (University of Birmingham), Conny Berlin (Novartis) & Valentina Strammiello (European Patients' Forum' Forum), & moderator Victor Gascon Moreno (GAAPP). Photos by the talented Arshia Foroughi #EUPATIAGM2026 #PatientVoice #PPI #PatientInvolvement #PatientPreferenceStudies #ClinicalResearch

Does “patient involvement” mean the same thing in every country? 🌍 Maybe not. Culture shapes how we communicate, how we understand health and illness, and how patients and researchers hear each other. If we don’t notice it, misunderstandings creep in quietly. EUPATI Essentials Module 2: Collaborating with patients across cultures is a practical, interactive online training for people who already work with patients and want to take their involvement to the next level. You’ll:  🌍 Explore definitions of culture, and the difference between societal and individual culture  💬 See how cultural elements shape the way we communicate  🧩 Look at how perceptions of health and disease can influence clinical trial enrolment and conduct  🛠️ Try educational tools that help overcome cultural misunderstandings  Small groups. Interactive. Co-designed and delivered with patients, academia and industry. 🤝 📅 10 December 2026 | 🕑 14:00-18:00 CET | 💻 Online 🔓 Register today: https://bit.ly/4B65X4i 🐣 Register for 2 trainings and take 10% off: combine Module 2 with EUPATI Spotlight (18 November) and save 10% on each. Know a colleague in academia or industry who’d benefit? Tag them and spread the word! 💙 #EUPATI #LearningLab #EUPATIEssentials #CollaboratingAcrossCultures #PatientInvolvement #Upskilling

EUPATI Suomen johtoryhmän puheenjohtaja Maria Pajunen sekä johtoryhmän jäsen Mikko Sinisalo vierailivat EUPATIn tämän vuoden Annual General Meetingissä, Brysselissä. Maria ja Mikko kuulivat kahden päivän ajan tiukkaa asiaa potilasosallisuudesta ja tapasivat eupatilaisia ympäri maailmaa. 🔵 Lue kuulumiset reissulta: https://lnkd.in/dTvAFju4 #EUPATI #EUPATIAGM

💡 How can research organisations build meaningful partnerships with patients and patient communities? At the EUPATI webinar From Awareness to Partnership, EATRIS’s Eliis Keidong will share how our patient involvement framework supports collaboration with patients and patient communities. EATRIS Slovenia’s Dunja Urbancic, Assistant Prof. at the University of Ljubljana, Faculty of Pharmacy, will contribute an example from work with SATB2 Europe. Initiated by the patient community, this early-stage drug repurposing partnership is developing cellular models and assays while connecting researchers with patients, biobanks and the wider scientific community. Join speakers from EATRIS, ECRIN (European Clinical Research Infrastructure Network) and INNODIA to discuss how patient involvement frameworks are developed and put into practice. 📅 15 October, 14:00–15:00 CEST | Online and free 👉 Learn more and register here: https://lnkd.in/eeS8EDTz #EATRIS_SI

New webinar series! 🤝 The EUPATI Academia/NGO Cluster proudly presents the first of a series of webinars on patient involvement in academic research: how do research organisations turn patient involvement from a good intention into everyday practice? From Awareness to Partnership: Building Bridges Between Academia & Patient Communities 📅 15 October 2026, 14:00-15:00 CEST  💻 Online | all are welcome and free to attend   👉 Register today: https://bit.ly/4i0fG3q In this first webinar, we’ll hear how EATRIS, ECRIN and INNODIA have each developed patient involvement frameworks and built collaboration with patients and patient communities into the heart of their work. Eliis Keidong and Dunja Urbancic will share the EATRIS approach, alongside Christine Kubiak and Fanni-Laura Mäntylä (ECRIN (European Clinical Research Infrastructure Network)) and Mónica Queipo, Ph.D. (INNODIA). At our recent AGM, we sat down with Christine Kubiak and Begoña Nafría Escalera (our Academia/Non-Profit Cluster Chair and Co-Chair) to ask what inspired these webinars, what fresh perspectives they’ll bring, and, without giving too much away, what might surprise the audience when comparing approaches across different organisations. 🎥 We’d love to see you there! Please feel free to share this within your networks. 💙 #EUPATI #PatientInvolvement #AcademicResearch #Webinar #EATRIS #ECRIN #INNODIA

Data & Dialogue didn’t end in Brussels. 💬 At our AGM, one topic kept coming up in every room: Patient Experience Data (PED). How it’s collected, how it’s used, and whether it really shapes decisions. It’s one of the fastest-moving topics in patient involvement right now, and your insights stayed with us. So we built on them. 🔦 Introducing EUPATI Spotlight, our new Learning Lab training on PED and the EU HTA Regulation (HTAR), co-designed by a patient expert and an HTA professional. Two perspectives, one session. Expect a real case study, and practical outcomes you can use straight away, like spotting evidence gaps and knowing when to call them out. Registration is open! Register here: https://bit.ly/4hZXOHw 🐦 Early bird: register by 20 October 2026 and get 10% off. Or pair it with EUPATI Essentials Module 2: Collaborating Across Cultures (10 December) and save 10% on each. 📅 18 November 2026 | 🕑 14:00-17:00 CET | 💻 Online Haven’t checked out our Spotlight page yet? https://bit.ly/3ULwsv2 Know someone in industry or academia who’d benefit? Tag them and spread the word! 💙 #EUPATI #EUPATISpotlight #LearningLab #PatientInvolvement #HTAR #PatientExperienceData #EUPATIAGM2026 #IndustryAndAcademia

How do research organisations turn patient involvement from a good intention into everyday practice? 🤝 Two upcoming webinars on the EUPATI calendar explore exactly that, & we're proud to be part of the conversation. In the first webinar, we'll hear how EATRIS, ECRIN (European Clinical Research Infrastructure Network) & INNODIA have each developed patient involvement frameworks & built collaboration with patients & patient communities into the heart of their work. Eliis Keidong, will share the EATRIS approach alongside Christine Kubiak (ECRIN (European Clinical Research Infrastructure Network) & Mónica Queipo, Ph.D. (INNODIA). At our recent AGM, we sat down with Christine Kubiak and Begoña Nafría Escalera (our Academia/Non-Profit Cluster Chair & Co-Chair) to ask what inspired these webinars, what fresh perspectives they'll bring, & (without giving too much away!) what might surprise the audience when comparing approaches across different organisations. Take a look at what they had to say 🎥 📅 15 October 2026, 14:00–15:00 CEST 💻 Online & all are welcome & free to attend 👉 Register today: https://lnkd.in/ebw_JDfM Filmed by talented Arshia Foroughi #EUPATI #OpenWebinars #PatientInvolvement #PatientCommunites #Academia #RegisterToday