The PROPHET Annual Meeting took place on 6–7 October 2025 at Amsterdam UMC, bringing partners and stakeholders together to reflect on progress and align on next steps for advancing personalised prevention in Europe. Two workshops were included in the programme.
The first workshop focused on the European Health Data Space (EHDS). The European Health Data Space: Implementation and Implications for Health Data Sharing in Europe – LHL – University of Amsterdam. National and international speakers and panellists discussed what EHDS implementation may mean for research, policy, and practice, highlighting opportunities for improved interoperability and cross-border collaboration. Participants identified harmonised procedures, shared approval processes, agreed data standards and the opt-out models as ways to improve data linkage and support research.
At the same time, discussions also addressed challenges, including differences in institutional practises, unresolved legal and governance issues and the complexity of integrating EHDS into existing systems, while emphasising the importance of trust, transparency, and responsible governance to ensure ethical and equitable health data use. . Speakers and panellists included: Dr. Mahsa Shabani (University of Amsterdam); Dr. Carla van El (Amsterdam UMC); Leone Flikweert (Health-RI); Dr. Jeroen Belien (Amsterdam UMC & Health-RI); Patricia Cervera de la Cruz (University of Gent); Dr. Sara Farina (Università Cattolica del Sacro Cuore); Prof. Martina Cornel (European Society of Human Genetics); Tessel Rigter (Amsterdam UMC); Dr. Astrid Moura Vicente (National Institute of Health Doutor Ricardo Jorge); Dr. James Hazel III (University of Amsterdam).
The second workshop featured a successful Stakeholder Workshop on the PROPHET Strategic Research and Innovation Agenda (SRIA), with 40+ participants joining online and in-person. After an introduction by Prof. Stefania Boccia (Università Cattolica del Sacro Cuore) on the PROPHET project and Dr. Roberta Pastorino (Università Cattolica del Sacro Cuore) on the development of the SRIA, speakers were asked to reflect on three clusters of key SRIA themes. The first session addressed the theme of Patients & Citizens Engagement, Education, Ethical, Legal and Societal Issues (ELSI), and Behaviour Change. Challenges mentioned included raising patient awareness and providing accessible and trustworthy information. Jacqueline Pot (Dutch national information center on genetics and heredity,Erfocentrum)illustrated how their organisation answers questions by citizens, professionals and the wider public, and curates a collection of information on hereditary disease. Such a national provision might also be helpful in other countries and at a European level. Mariana Coutinho (Hereditary Cancer Association EVITA, Portugal) emphasized the important role of patient organisations in empowering and truly involving patients in organising care, to allow for better support, and motivation for behaviour change.
The second session addressed Education & Engagement of Health Professionals in Personalised Prevention. Prof. Daniela Turchetti (University of Bologna, Italy) and Dr Francesca Faravelli (Giannina Gaslini Institute, Genoa, Italy) addressed the importance of making genetic information available and understandable for non-genetic healthcare professionals so they can support their patients. The third session highlighted Health Technology Assessment (HTA) and Policy Strategies for Personalised Prevention. Prof. Chiara de Waure (University of Perugia, Italy) and Dr. Wendy Maas (Axon Healthcare, The Netherlands) addressed challenges of performing HTA on emerging technologies, such as establishing evidence, providing policymakers with relevant information for decision making. While specific applications may be assessed at a European level, broadening HTA with Health Impact Assessment taking account of all relevant stakeholders, including companies, can improve realistic assessments in a (national) context.