European Young Persons Advisory Group Network
Increasingly researchers are asked by funders and ethics committees to provide a Patient and Public Involvement (PPI) plan and to demonstrate they have considered the perspectives of the patients and families they wish to recruit to their clinical trials and research. The European Young Persons Advisory Group Network (eYPAGnet) can provide support in both the design and delivery of the Patient and Public Involvement Plan for any research involving babies, children and young people.
eYPAGnet is a consortium of experts who facilitate meaningful Patient and Public Involvement with children, young people, and families across Europe. eYPAGnet provides a platform for children and young people to have a voice, share their opinions, and apply their experience to a variety of issues in clinical trials, such as relevant endpoints, protocol design, formulations, age-appropriate information, and patient tools.
The network was founded by the leaders of the first Young Person’s Advocacy Groups: Jenny Preston (GenerationR Liverpool, England) Pamela Dicks (ScotCRN YPAG, Scotland), Segolene Gaillard (Kids France Lyon, , France) and Begonya Nafria (Kids Barcelona), who are also partners within the c4c consortium and involved in the PPI work package. They met at enprEMA (European Network of Paediatric Research Networks at the European Medicines Agency) and identified a need for a network to coordinate high quality and meaningful PPI in Europe, and where investigators could access the opinions of children and young people in a manner that was regulated with standard contracts, confidentiality agreements, agreed payments for services, and services that were ethically sound.
eYPAGnet was created in 2018 with the purpose of:
- Improving the capacity of collaboration between children, young people, and stakeholders who participate in the research process and development of innovative drugs.
- Promoting the planning and development of clinical research initiatives for children at a European level.
- Unifying the curriculum of training programs for children, young people, and facilitators of YPAGs.
- Promoting and supporting the creation of new groups.
- Empowering children and young people to have a voice in Europe that is valued.
- Providing a centralised point of contact for investigators
Initially eYPAGnet was focussed on working with the associated Young Person’s Advocacy Groups but this has expanded to working with patient and parents of children with lived experience of the disease of concern via focus groups. The majority of YPAGs include young people of school age, who are patients, regular attenders at the hospital, and/or have an interest in science, healthcare, and children’s rights. YPAGs are predominantly facilitated by a professional involved in a clinical research facility, children’s hospital, or academic institution. eYPAGnet now has 30 member groups in 14 countries. A free Toolkit with resources for anyone wanting to set up a YPAG which is available on our website Toolkit Archive – eYPAGnet.
Patient and parents focus groups are created as required by contacting patients via clinical colleagues and patient forums. eYPAGnet facilitates the engagement with the patient and parent(s) and ensures it is in their language of choice, is respectful of their needs, pays then for their time and that they receive feedback on how their input had impacted the research.
eYPAGnet has continued to work with enprEMA and contributed to the document on The Principles of the Involvement of Young Patients/Consumers in EMA Activities https://www.ema.europa.eu/system/files/documents/regulatory-procedural-guideline/wc500231645_en.pdf.
eYPAGnet has extensive experience supporting clinical trials, non-drug interventional trials, health technology and digital applications for paediatric healthcare. If want to discuss potential studies please contact us at info@eypagnet.eu.
