Involving children and young people in clinical research through the forum of a European Young Persons’ Advisory Group: needs and challenges

In our world of today there are many health problems without any solutions, therefore the involvement and collaboration of people in different health projects are of great value. Furthermore children and Young persons (CYP) in particular are seen as fundamental to the design and delivery of clinical research as active and reflective participants. In Europe involvement of CYP in clinical research is promoted extensively in order to engage young persons 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. This initiative is also promoted by the European Medicines Agency (EMA) which recently reinforced the importance to involve young patients/consumers within their activities. We describe the needs for involving CYP in clinical research, highlighting the methods and benefits of including their perspectives, the challenges researchers can be facing.and how a network of YPAGs can facilitate.Material and methods:CYP can be trained in clinical research through participation in young person advisory group’s network (YPAGs). Members of YPAGs assist other CYP to learn about clinical research and share their experience and point of view to researchers. All other the world ICAN has been acting to promote YPAGs. In Europe, this development is undertaken by the constitution and work of the European Young Persons’ advisory group Network (eYPAGnet).Results:CYP are needed at all phases of research including development and priorization of research questions, design and methods, recruitment plans, and strategies for results dissemination.CYP can benefit from their participation in YPAGs by: (1) allowing their voice to be heard and(2) developing a variety of transferable skills. Benefits for researcher are: (1) development of their understanding of CYP and thus (2) enhancing recruitment and retention rates in pediatrics studies. CYP’s education needs, ethics concerns (contribution and rewards), trained staff remain challenges in the involvement of CYP.Conclusion:There is still a lot to do to better take into account the voice of CYP, particularly in very early processes of clinical development such as setting up priorities in research. Some tools remain to be developed to better understand and analyze the impact of YPAGs on the quality of clinical research and its conduct. But the direct engagement of CYP in research is already favorable to both researchers and CYP. YPAGs are helping in making clinical research more relevant and useful for children who will be ultimate users of these results.

Keywords:

Young person , Clinical research , Advisory group , Paediatrics , Patient and public involvement