European Patients' Forum

🤗 This week, the new Gravitate Health E2E ePI Community was presented at #DIAEurope2025 in Basel. The session on #patient #centricity and #eP, with Anne Moen, Kate Porch and Koen Nauwelaerts, and organised under the Regulatory Operation track of DIA, was a success! Gravitate-Health have been instrumental to create vibrant #multi-stakeholder #community that is paving the way for broader uptake and adoption, putting European Medicines Agency #ePI key principles to work in ways that ensures patient centricity at the heart of new digital health information solutions. From the discussion at #DIAEurope2025, we see that Gravitate-Health has been a catalyst to promote wider uptake and maturity of the #ePI #FHIR standards, and we are emphasising patients active contributions in #co-creation of solutions that improve access to understandable information for #safer use of #medicines. We have learned that the quality of the information resources is crucial, and if we get #standardisation and #harmonisation right, it may open up a lot of doors for dissemination downstream to and with patients and their support network. We are inviting you to visit our website for more information and join our growing community 🤝 👉 https://lnkd.in/dFAYRNz Innovative Health Initiative (IHI) Det medisinske fakultet UiO Pfizer ECHAlliance - The Global Health Connector HL7 Europe Bayer Johnson & Johnson Boehringer Ingelheim European Patients' Forum

Greetings from Basel, Switzerland, where we participated in the DIA Europe event 2025! EPF was represented by our colleagues Valentina Strammiello, Director of Strategic Initatives, Gozde Susuzlu Briggs, Senior Programme Manager, and Milana Trucl, Senior Policy Officer, who spoke in several sessions and highlighted the importance of patient-centred innovation in healthcare. 💬 Valentina Strammiello spoke about the digitalisation of medicines regulation and how it can improve access to care, accelerate decision-making, and empower patients through better access to their own #healthdata. In a separate session, she also stressed that while overall survival is often used as a primary endpoint in evaluating new technologies, it is not always the most meaningful measure for patients as quality of life is a crucial factor too, and that’s why patients must be involved in shaping which outcomes are prioritised to better inform decisions and support more person-centred care. 💬 Gözde Susuzlu described the critical role of patients as catalysts for meaningful innovation across all areas of healthcare. By embedding their lived experiences and needs at the core of research and development, we not only accelerate the creation of solutions that truly matter, but also strengthen the predictability needed to secure sustainable R&D investment. She also highlighted the potential of digital tools and health data to accelerate clinical trials and R&D, emphasising that equity and inclusion must be built in — ensuring diverse patient representation, inclusive study design, and fair access to innovation. 💬 Milana Trucl emphasised that patients must be involved in #AI development to ensure fair, ethical, and effective solutions. She noted that trust, transparency, and diverse data are key to building AI that truly reflects patient needs. We thank the #DiaEurope2025 organisers for this successful event and for welcoming EPF to bring the patient perspective to the table!

🎙️ Why is patient involvement important when developing digital health technologies? In the first episode of our new podcast series #EDiHTATalks, we spoke with Sheila Khawaja, Patient Engagement & Advocacy Expert, who is actively involved in the EDiHTA project through the Patient Advisory Group. In our conversation, we discussed the barriers patients face in adopting digital health technologies, and how EDiHTA could impact the future adoption of these technologies across Europe. 👉 Listen now: https://bit.ly/4bO6X0D #EUPatientsPodcast #PatientVoice #DigitalHealth #HTA

Save the date! 🗓️ On 25th March, King's College London is hosting an in-person event in Brussels to discuss the ethics of implementing Artificial Intelligence (AI) in healthcare. The event will feature keynote speeches and dynamic panel discussions that tackle the ethical dilemmas of implementing AI in routine clinical care. Topics will include accountability, legal liability, and the risks of dehumanisation and disempowerment. 🔗 Register here: https://lnkd.in/eC2QtgJR #AI #healthcare

On March 6th, H2O Spain, the European Patients' Forum and Hospital Universitari Vall d'Hebron Campus hosted an insightful event at the Vall d’Hebron Institute of Research (VHIR) - Vall d'Hebron Institut de Recerca in Barcelona. The event brought together patient organizations, healthcare professionals, and key stakeholders to discuss the transformative power of #healthdata and the critical role of citizen participation in shaping better healthcare. 📌 Key takeaways from the event: ✅ The Power of Citizen Participation in Healthcare – Engaging citizens – not “just” patients – is essential to improving healthcare systems and outcomes. ✅ Empowering Patients Through Data – “If the patient wins, we all win.” The importance of patient-reported outcomes (PROs) as a driver for better decision-making and patient-centered care. ✅ From Data to Action – “Evidence is necessary for decision-making; otherwise, they are just opinions.” Experts stressed the need for evidence-based decision-making to build a more inclusive and efficient healthcare system. ✅Importance of Education and Awareness in Digital Health – Digital health solutions thrive when citizens and healthcare professionals are well-informed. ✅ Data Saves Lives – Understanding and leveraging health data can directly improve patient outcomes and save lives. Through presentations, engaging panel discussions, and an interactive workshop, participants explored how to strengthen citizen involvement in health data integration while addressing key challenges. The workshop provided a valuable hands-on opportunity for stakeholders to collaborate, exchange ideas, and identify actionable solutions—reinforcing the importance of co-creation in shaping the future of healthcare. The event also underscored Spain’s leadership in advancing health data strategies, including the European Health Data Space (EHDS), and the pivotal role of the national observatory in this effort. 🙏 A huge thank you to all who contributed their expertise, insights, and passion to this conversation! 🔗 Yolima Cossio, Izabel Alfany (EIT Health Spain), Sandra García-Armesto (Agència de Qualitat i Avaluació Sanitàries de Catalunya (AQuAS), Albert Barberà, Estefanía Callejas De Luca (EPF), Javier Creus (Saluscoop), Jordi Cruz (Fundación FEDER), Pedro Carrascal (Plataforma de Organizaciones de Pacientes), Roberto Saldaña (EUPATI España), Pilar Rodriguez Ledo, Francesc Iglesias, and Ana Martí Delgado. #CitizenParticipation #HealthcareInnovation #HealthOutcomes #H2O #HealthResearch #DataDrivenHealthcare #HealthcareRevolution

How will the European Health Data Space (EHDS) regulation strengthen patient engagement, trust, and data protection? Today, the European Commission is hosting the conference: "The European Health Data Space (EHDS) - Unlocking Europe's Health Data Future Together". Anca Toma, our Executive Director, joined the panel: "Building Trust: Privacy, Security, and Patient Engagement" to discuss concrete actions for implementing the regulation while ensuring the ethical and transparent use of health data. 📢 It is crucial that patients and patient organisations are involved in shaping EHDS governance, ensuring that the system is designed with and for patients. Healthcare providers and governments need to collaborate with patients so the implementation fosters trust in the system. The regulation is coming into force this month. Read our analysis to learn more ➡️ https://bit.ly/4gtbvKC 👥 Anca Toma joined the panel discussion alongside Daniel Theisen (Director of ALAN - MALADIES RARES LUXEMBOURG), Ole Johan Bakke (President of Standing Committee of European Doctors (CPME)), Marek Migdal (Director of Centrum Zdrowia Dziecka), and Marco Marsella (Director of Digital Health & Systems, DG SANTE), with moderation by Saila Rinne (Head of Unit H3, DG CNECT). #EHDS #HealthUnion #DigitalHealthEU #HealthData

Today marks the start of the Civil Society Week – an initiative led by the European Economic and Social Committee. 📢 Across the world, civil society helps lawmakers better serve their people by bringing the most pressing issues to the debate.  With this in mind, EPF is launching #WeAreHere: a campaign to reflect on how our advocacy has supported our community and aligned with European priorities. We also look ahead to explore how we can continue to better serve our community. In these uncertain times of shifting political landscapes, resilience, introspection, and collective learning are more important than ever. A vibrant civil society is the foundation of a truly democratic society, ensuring that diverse voices are heard, challenges are addressed, and meaningful change is achieved. More than ever, we stand together. We are here.  ➡️ https://bit.ly/4kWEJEY #CivSocWeek #StandWithPatients  

🔹 Construyendo juntos el futuro de la sanidad 🔹 La participación de los pacientes es un derecho y una necesidad para mejorar nuestro sistema de salud. En el ciclo "10 temas que marcarán el futuro de la sanidad", organizado por Diariofarma, quedó claro que no podemos retroceder en la representación de los pacientes en la toma de decisiones. Como bien señaló Marco Greco , presidente del European Patients' Forum, debemos pasar de hacer las cosas para los pacientes a hacerlas con ellos. 📢 Desde la Plataforma de Organizaciones de Pacientes (POP), defendemos que la voz de los pacientes debe estar presente en todos los niveles del sistema sanitario: ✔️ En el diseño de políticas sanitarias, asegurando que las decisiones reflejen las necesidades reales de quienes viven con enfermedades crónicas o de larga duración. ✔️ En los órganos reguladores, para que los tratamientos, medicamentos y tecnologías sanitarias sean evaluados considerando la experiencia de quienes los utilizan. ✔️ En la gestión asistencial, porque una sanidad más centrada en el paciente es también más eficiente y sostenible. No se trata solo de mejorar la calidad asistencial, sino de avanzar hacia un modelo donde la corresponsabilidad entre pacientes, profesionales sanitarios y gestores sea una realidad. 💡 ¿Cómo podemos fortalecer la participación de los pacientes en la toma de decisiones? Desde la POP seguiremos trabajando para que esta transformación sea imparable. Gracias a Diariofarma por esta conferencia en el marco de su 10º aniversario que contribuye a visibilizar y reforzar el trabajo de las asociaciones de pacientes. Y gracias por supuesto a Marco Greco por venir a Madrid y compartir con nosotros. Gracias María Luisa del Moral, viceconsejera de Salud y Consumo de la Junta de Andalucía y Gabriel Rojo, subdirector de Humanización del Servicio de Salud de Islas Baleares. GABRIEL ROJO RODRIGUEZ CESIDA Coordinadora estatal de VIH y sida Fenaer Pacientes Asociación Española contra el Cáncer cardioalianza undefined Fundación Menudos Corazones Confederación Española de Alzheimer (CEAFA) Plataforma de Organizaciones de Pacientes Federación Española de Párkinson 🔗 Artículo completo aquí: diariofarma.com

This week, Marco Greco, President of EPF, delivered a lecture titled "The role of the expert and co-decision maker patient" at an event organised by Diariofarma. The event is part of a series of conferences called "Ten issues that will mark the future of healthcare". 📢 Marco Greco highlighted the need for patients to have not only a voice, but an effective vote in health policy decision-making. He stressed that "removing voting rights of patient representatives in the European Medicines Agency Committees diminishes both their expertise and the meaningful influence they should have on regulatory decisions that directly impact them." Read about the event ➡️ https://lnkd.in/d_9UT3t2 As the EU revises its pharmaceutical legislation, we, together with EURORDIS-Rare Diseases Europe, urge Member States to ensure strong and meaningful patient involvement in the EMA's decisions.   Read our joint statement ➡️ https://bit.ly/3FidHrp #KeepPatientsVoting #PharmaceuticalLegislation #PatientVoices #EUHealth #WeAreHere

Today, EPF Board member Elena Moya gave a presentation at the annual meeting of the European Union Joint Action on Antimicrobial Resistance and Healthcare-Associated Infections 2 (EU-JAMRAI 2) held in Bilbao, Spain. Coordinated by INSERM, EU-JAMRAI 2 brings together over 120 organisations from 30 countries and aims to combat Antimicrobial Resistance (AMR) through a comprehensive "One Health" approach.   💬 Elena Moya emphasised that patient organisations can significantly boost our efforts to raise awareness of #AMR and put forward a number of proposals to unlock the involvement of patient organisations in this area: 🔹 Capacity-building programmes for patient organisations on AMR. 🔹 Close involvement of patient organisations in the development and implementation of national action plans against AMR. 🔹 Access to sustainable and stable funding for patient organisations. More about our work on AMR: https://lnkd.in/gs3MQH9t #EUJAMRAI2 #OneHealth Marie-Cécile Ploy Ana Tamayo Yohann Lacotte