c4c outreach to patient advocates nationally- Webinar for the Dutch EUPATI-NL community

VSOP, the Dutch Patient Alliance for Rare and Genetic Diseases, is participating in the c4c cross-cutting team for Patient and Public Involvement (PPI), which is working on implementation of patient and public involvement activities across Europe. VSOP was invited by the EUPATI-NL project team to present a webinar about c4c in the Netherlands and paediatric clinical research. Together with PGOsupport, a Dutch networking organisation for patient involvement, and Radboudumc, an interactive program was created. The EUPATI community of trainees and alumni and a wider audience of patient organisations were invited.

More than thirty participants attended the webinar and listened to a presentation by Fenna Mahler (Radboudumc) as program coordinator of conect4children about the set-up and objectives of the project. Subsequently Mariëtte Driessens (VSOP) elaborated on how patients are involved in paediatric clinical trials advice requests at the European level and what kind of internal organisation should be set up in patient organisations to be able to support these requests. Final speaker Eric Vermeulen (VSOP) shared practical examples from the PedCrin project and discussed the differences between and complementary function of engagement through YPAGs (Young Persons Advisory Groups, young persons, not specific patients) and patient groups.

To generate interaction, several questions were asked. The first question addressed the experience of the audience. Half of them had experience with participation in paediatric research. Ten participants expressed interest to register in the c4c patient database and/or to start a working group on research in their own organisation. With these activities, they aim to be more professional in their advocacy and be able to provide better information about clinical research to their members and wider community. They were interested in partnership or advisership in clinical research.

After the meeting the participants received an information leaflet about c4c and other national supportive organisations and information materials. The webinar in Dutch can be viewed here until the 1st June 2022.