The involvement of children and young people in the drug development process is not common practice. Regulatory agencies, such as the European Medicines Agency (EMA), encourage patient involvement in study protocol design, and there is evidence of the benefits of incorporating patients’ voices into this process. Despite this, the expertise required to involve minors in health science projects remains a limitation to ensuring that this practice becomes standard.

The European Young Person’s Advisory Group Network (eYPAGnet), accredited by EnprEMA (European Networks of Paediatric Research at EMA), was set up in 2017 by four paediatric hospitals with the aim of providing a solid infrastructure to support the involvement of paediatric patients and parents in drug development. This is achieved through the design of bespoke patient involvement plans and the delivery of these services by well-known experts across Europe.

Patient-facing documents, such as patient information sheets, assent forms, educational materials, and lay summaries, are areas where patients and parents can provide a unique perspective. Their input helps ensure that these materials are appropriate for their health literacy levels, needs, and expectations, ultimately empowering them to be active participants in clinical research projects.

The aim of this presentation is to introduce the services, methods, and lessons learned from more than 10 years of activities carried out with the active participation of young patients and parents as experts providing advice in health research projects.