The involvement of patients and the public in projects related to health research design and conduct has a long history, specifically in activities such as providing feedback in regulatory activities about new medicines. The European Medicines Agency (EMA) for example has over 20 years experience engaging adult patients in scientific sessions demonstrating the benefits of the contribution of patients in discussions before the approval of new medicines.
However, when we talk about involvement of children and young people in health science and research the experience is limited and fragmented. In 2006 Alder Hey Hospital in Liverpool was one of the first institutions to setup a Young Person’s Advisory Group (YPAG) to be involved in scientific and health related research projects as advisors.
They have inspired other institutions around Europe to support the involvement and engagement of young people through the forum of YPAGs, and in 2018 in collaboration with Sant Joan de Déu Children’s Hospital, the European Young Persons Advisory Network (eYPAGnet) was formed.
SJD Children’s Hospital established it’s own KIDS Barcelona YPAG in 2015, with the aim of ensuring that all projects institution got involved with are patient/family centric.
In 2019 SJD Children’s Hospital was successful in obtaining funding from the EIT Health initiative to co-create the development of a training programme to ensure that all members of existing YPAGs working across Europe are trained within a standard curriculum of contents. This training programme also will be shared and implemented in schools that will be interested to educate young people to be involved in activities of citizen science in the health and research setting.
The YEAH project, Youngsters EngAgement in Health, is focused on the development of four modules:
- Patient and Public involvement.
- Protocol Design.
- Quality of life and patient reported outcomes.
- Educational and informative materials.
Young members of the Liverpool and Barcelona YPAGs will co-create content and activities, during 4 workshops guided by educational experts, at the same time are building a programme to facilitate the involvement of youngsters in clinical and trial research, across different European countries.
“Unfortunately children and young people suffer diseases so they deserve the same opportunities as adult patients to be involved in the design and conduct of health research projects” says Begonya Nafria, Coordinator of YEAH. We learn with them when we include them as a part of our projects. The most important benefit is that involving young people relevant results in the delivery of better initiatives are ultimately better medicines for children and young people”.
The consortium is formed by:
- Sant Joan de Déu Barcelona Children’s Hospital (Coordinator)
- The University of Liverpool.
- Universitat de Barcelona.
- Institut de Formació Continuada (IL3-UB).
- Bayer AG.