YEAH project, the training opportunity to involve young people in health research (Guest blog)
This is an EitHealth granted project that has the aim to build a European curriculum to train young people in the field of health research. Traditionally the research with paediatric population has not been promoted as has been needed. Health professionals are facing with many diseases that only occur with minors and also there are many treatments in which the research done previously to their authorization has been only within the adult setting.
In this context, the Pediatric Regulation that came into force on 2007 has improved this scenario with the requirement to develop a PIP (paediatric investigational plan) not later than upon completion of the human pharmaco-kinetic (PK) studies of an adult treatment. Nevertheless as previously mentioned there many health conditions that are only suffered by children and young people where still research is an unmet need.
The involvement of patients and citizens in the health research initiatives make the projects more feasible and obviously facilitating to target their needs. In this sense, the involvement of adults has a long tradition, for example in regulatory activities from 1996. When we talk about minors, the evidence still is quite limited and many needs are necessary to be covered to facilitate the right framework to ensure the ethical and right methodological framework.
Training is a key aspect to facilitate the involvement of young people in health research. Specific knowledge and skills are required and these are not covered with the curricula from their schools, as the approach to health sciences is always done from the scientific perspective. The YEAH project (Youngsters EngAgement in Health) that was kick-off in January has a main goal the design of an specific curriculum with a digital toolkit of educational resources, that will bring the right knowledge and skills to make feasible the inclusion of young people as advisors along the whole research cycle.
The project is coordinated by Sant Joan de Déu Research Foundation who with the University of Liverpool are part of the founders of eYPAGnet (European Young Persons Advisory Groups Network). The educational expertise is provided by the IL3 Institute and the ethical expertise by the University of Barcelona. The project is further supported by two partners from the pharma industry, Bayer AG and Sanofi, who contribute to the project their experience regarding industry needs and current approaches used regarding the involvement of paediatric population as advisors.
The YEAH project, 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.
“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 celebration of the Clinical Trials World Day is a great opportunity to highlight the need of meaningful research for children and young people ”.