In research planning and implementation, there is increasing discussion about involving patients and their families. The eYPAGnet (European Young Persons Advisory Group Network) conference was convened by doctoral student Begonya Nafria, who leads Patient Engagement in Research in Spain and is a member of the eYPAGnet steering committee. Representing ELAV were Saale Koonik (TÜK) and Heli Rajasaar (TÜ).

The conference was opened by Joanna Cleverol, whose message highlighted the importance of making children’s voices heard in research. Joanna, Director of Clinical Research at Barcelona Children’s Hospital, specializes in innovative treatments for patients with rare diseases. Since 2015, she has led initiatives to involve patients in research preparation and implementation.

In her presentation, Begonya emphasized the importance of collaboration between different groups: parents and children, young people, patient associations, local and international networks, hospitals, pharmaceutical companies, and sponsors. PPI services include research support, training, PPI advice and coordination, engaging patients and the public, impact assessment, and reporting.

Jenny Preston (eYPAGnet Steering Committee, UK) presented research findings showing that children’s involvement in studies remains limited.

Dr. Ally Dunhill, representing Eurochild, spoke about considering children’s rights and presented the results of a survey that included data collected from children in Estonia.

Jasmine Kincaide from Bayer introduced the industry’s perspective on when and how to involve children, young people, and parents.

Representatives from Poland, Spain, Ireland, and Portugal shared their experiences working with children, young people, and parents. A notable new member of eYPAGnet, Aleksander Wiśniewski from Poland, surprised participants with his rapid creation of a group of children and young people (aged 9 to 18) within a few months. These individuals are either patients themselves, have sick children in their families, or are simply interested in science. “Meetings are held once a month, and participants come from all over Poland,” Aleksander shared.

The day concluded with a case discussion aimed at addressing questions such as who to involve in PPI activities, when to involve them, and how to do so effectively. Planning PPI activities proved to be a significant challenge.

The enthusiasm of the presenters was contagious, and on our way back, Saale and I discussed how to kick-start PPI activities in Estonia.

Many thanks to the organizers for their excellent work!