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Involving children and young people in clinical research through the forum of a European Young Persons’ Advisory Group: needs and challenges
Author(s) -
Gaillard Segolene,
Malik Salma,
Preston Jenny,
Escalera Begonya Nafria,
Dicks Pamela,
Touil Nathalie,
Mardirossian Sandrine,
ClaverolTorres Joana,
Kassaï Behrouz
Publication year - 2018
Publication title -
fundamental and clinical pharmacology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.655
H-Index - 73
eISSN - 1472-8206
pISSN - 0767-3981
DOI - 10.1111/fcp.12360
Subject(s) - advisory committee , family medicine , medicine , gerontology , psychology , political science , public administration
Children and young people are seen as fundamental to the design and delivery of clinical research as active and reflective participants. In Europe, involvement of children and young people in clinical research is promoted extensively in order to engage young people in research as partners and to give them a voice to raise their own issues or opinions and for their involvement in planning and decision making in addition to learning research skills. Children and young people can be trained in clinical research through participation in young person advisory groups (YPAGs). Members of YPAGs assist other children and young people to learn about clinical research and share their experience and point of view with researchers, thereby possibly influencing all phases of research including the development and prioritization of research questions, design and methods, recruitment plans, and strategies for results dissemination. In the long term, the expansion of YPAGs in Europe will serve as a driving force for refining pediatric clinical research. It will help in a better definition of research projects according to the patients’ needs. Furthermore, direct engagement of children and young people in research will be favorable to both researchers and young people.