European Patients' Forum

Today, EPF attended the 5th International Conference on Rare Diseases, themed “Sustainability in Action: Rethinking the Rare Disease Paradigm from Prevention to HTA and Access.” Marco Greco, EPF President, contributed to the panel discussion, "Reflections on the Future of a Sustainable and Competitive ATMP Landscape in the EU", where he emphasised the importance of continued investment in research, enhancing patient involvement in regulatory processes. Valentina Strammiello, EPF Director of Strategic Initiatives, joined a panel discussions addressing the new #HTA regulation and patient involvement. Since 2023, EPF has been actively assessing patient community readiness for the HTAR, identifying critical dynamics and bottlenecks in patient involvement. Awareness and capacity building are crucial at this stage, ensuring patients fully grasp the implications and opportunities of the HTA regulation. At this critical juncture, one question stands out clearly: Do stakeholders, especially patients, already see areas needing improvement? Our recent collaborative exercise with EAMDA and Open Health aimed at consensus-building around defining a potential PICO revealed encouraging alignment among patients. Yet, patient involvement must become more meaningful, particularly concerning timing in Joint Clinical Assessments (JCAs), and patient input must be robust and influential. Which leads us to another critical question: How can other stakeholders financially and structurally support patient involvement? Both public and private sectors must intensify collective efforts to adequately support patient engagement in HTA processes. Recognition of patient organisations as key healthcare stakeholders, supported actively by national authorities, is essential. Ultimately, success in HTAR implementation will rely on increased predictability and transparency within the HTA process.

We kicked off the year with a brand-new Season 4 of the European Patients’ Podcast! 🎙️ Our latest three episodes explore key health topics that matter to patients across Europe: ✅ Episode 1: "2025: Health Forward" – with Claudia Louati, EPF Head of Policy. ✅ Episode 2: "Project spotlight: PROPHET" – with Stefania Boccia, Coordinator of the PROPHET.EU project. ✅ Episode 3: "EDiHTA Talks #1: The role of patients in the development of digital health technologies" – with Sheila Khawaja, Patient Engagement & Advocacy Expert involved in the EDiHTA project. Don’t miss out – tune in, share, and join the conversation! 🎧 https://lnkd.in/dmEb3tiT #EUPatientsPodcast #PatientVoice

Yesterday, the EU4Health Civil Society Alliance brought together over 150 participants (both in person and online) for a pivotal discussion on the place of health under the next Multiannual Financial Framework (MFF). Hosted by MEP Tilly Metz, MEP Stine Bosse, MEP Vytenis Andriukaitis, and MEP Andras Kulja MD, the event showcased strong cross-party support for ensuring that health remains a top priority in the EU budget. 💡 Experts from local health authorities, civil society, research, and EU institutions explored the challenges and solutions for strengthening the European Health Union. As negotiations for the next MFF will soon begin, we reaffirm our call to: ✅ Make health a central pillar of the EU budget, as emphasised by our Executive Director, Anca Toma. ✅ Ensure stable and sustainable funding for health NGOs. ✅ Involve civil society organisations from the outset to achieve the health objectives in the next MFF. With: Milka Sokolović, European Public Health Alliance (EPHA) | Michele Calabro', EUREGHA - European Regional and Local Health Authorities | Marleen Kestens, European Heart Network (EHN) | Marleen PM Bekker, EUPHA - European Public Health Association | Irene Norstedt, European Commission #EU4Health #EUHealthUnion #MFF #HealthFunding #CivilSociety

EPF was invited to speak at the European Parliament yesterday for the EPSA - European Pharmaceutical Students' Association Annual Reception on "Securing the Future of Pharmacy: Addressing Workforce Shortages in Europe". Solène Jouan, Policy Officer at EPF, contributed to the first panel session: "The Impact of Workforce Shortages on Pharmacy and Patient Care: Dialogue Between Professionals, Students, Patients, and Policymakers", alongside MEP Vlad Voiculescu (Renew, Romania), some EPSA's representatives, and Ilaria Passarani, Secretary General of Pharmaceutical Group of the European Union (PGEU). During this panel, Solène shared the patient perspective on how current workforce shortages affect both the accessibility and quality of patient care. She highlighted the impact these shortages have on the patient-provider relationship, patient safety, and patients' ability to access timely and equitable healthcare. It's crucial to remember the lessons learned during the #COVID19 pandemic and the importance of implementing solutions at both the EU and national levels to safeguard the core principles and patients' rights to universal access to healthcare. Photo credit: EPSA - European Pharmaceutical Students' Association #medicineshortages #PatientVoice

Antimicrobial Resistance (AMR) is a global health threat, with bacterial #AMR being associated with over half a million deaths in the WHO European Region in 2019 and projected to cause three deaths every minute between 2025 and 2050 globally. 📈 Drawing on testimonials from patients and stakeholders, our policy paper “Antimicrobial Resistance Through Patients' Eyes: Stories and Insights” highlights patients’ experiences with AMR. We also outline several solutions for tackling this issue, such as addressing communications challenges, improving patients’ and the public’s health literacy, and amplifying the patient voice in the AMR debate. Read more here ➡️ https://lnkd.in/demv5aEp #AntimicrobialResistance #UnderstandingAMR #PatientVoice

This Wednesday, we’ll gather at the European Parliament for an important discussion on the future of EU health funding. 📢 “Unlocking Europe’s future: Prioritising Health under the next Multiannual Financial Framework” 🗓️ 26th March | 15:00-17:00 CET ℹ️ https://lnkd.in/gKsFvab9 (In-person attendance is now closed) This event will be hosted by MEP Tilly Metz, MEP Stine Bosse, MEP Vytenis Andriukaitis, and MEP Andras Kulja MD. Together with key speakers, we will discuss the future of the European Health Union and the role of health in the next Multiannual Financial Framework. With: Anca Toma (European Patients' Forum) | Milka Sokolović (European Public Health Alliance (EPHA)) | Michele Calabro' (EUREGHA - European Regional and Local Health Authorities) | Marleen Kestens (European Heart Network (EHN)) | Marleen PM Bekker (EUPHA - European Public Health Association) | Irene Norstedt (European Commission) #EU4Health #EUHealthUnion

🤗 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 Initiatives, 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