eYPAGnet are experts in Patient and Public Involvement and Engagement (PPIE) methodology that supports the design and conduct of paediatric clinical research. This includes expertise in the assessment of the impact of PPIE on young patients and families, and on recruitment and retention to studies.
eYPAGnet provides bespoke advice to ensure meaningful PPIE with children and families. This includes:
Supporting and/or delivery of ethical and purposeful involvement of disease-specific young patient and family groups across Europe.
Access to a network of YPAGs across Europe that can provide timely input to study design, patient documentation, and tools.
Access to experts in the methodology of impact assessment of PPIE on patients and family participants, on the research and outcomes of the research such as recruitment and retention rates, and on the PPI participants using bespoke tools.
Here are just some of the services we offer.
Supporting study DesignCo-creating patient documentation & toolsDisseminationBespoke trainingCo-creating educational materials
In more detail
Study Design Support young patient and family involvement in the design and review of research protocols, patient and parent-reported outcomes, patient priorities, and recruitment strategies.
Patient Documentation & Tools Facilitate young patient and family involvement in the creation or review of patient-facing materials such as Patient Information Sheets; Assent and Consent documents, Patient Diaries and Electronic Applications. Gathering young people’s views of patient reporting tools and patient motivational tools such as behaviour, exercise, and diet interventions.
Dissemination Activities Facilitate workshops to create or review lay summaries, or other dissemination tools (such as video production) of study results.
Training
Development of content and delivery of training/workshops/webinars for researchers and children, young people, and families on topics such as Why, What, and How to involve children & young people; children’s rights and participation; the ethical and safeguarding implications of PPI with children and young people; increasing children and young people’s knowledge and understanding of clinical research, and critical appraisal skills.
Educational Materials Production and/or review of booklets, leaflets, videos, and animations.
