Patient and public involvement (PPI) is the active involvement of patients and/or individuals from the general population as collaborators in scientific research. Evidence suggests that research prioritization, commission, execution, translation, success, and relevance can all improve as a result of PPI [1-3]. This is thought to occur as a result of the unique perspectives offered by members of patient groups and public. PPI was found to have meaningful impact on a variety of institutions: members of a PPI group have praised collaborations with research for increasing their confidence and sense of purpose, and gaining interviewing and group-speaking skills; researchers gained new insights into the area of study, and improved trust and confidence with PPI; and community’s acceptability and trust of research improved, along with an increased awareness of various diseases or conditions .
PPI’s rapid adoption by various organizations around the world is a reflection of its positive impact on research. Although challenges to PPI exist, particularly with respect to planning and implementation, the ethical, political, and scientific arguments for including patients and public as advisors in research cannot be ignored .
Clinical trials in children are necessary to uncover efficacy of interventions for improved health and well-being of the pediatric population. Furthermore, there is a need to improve design, conduct, and reporting of pediatric clinical research [5-8]. YPAGs, a form of PPI, may help researchers address the aforementioned issues pertaining to clinical research on children.
Four main groups of existing YPAGs are found in the UK and North America. These leading youth advisory groups include:
- National Young Persons’ Advisory Group Generation R of the National Institute for Health Research
- Young Persons Group of the Scottish Children’s Research Network (ScotCRN) in Scotland
- KidsCan Youth Advisory Group of the Child & Family Research Institute (CFRI) in Canada
- Kids and Families Impacting Disease Through Science (KIDS) in the USA and Europe
Together, they form the International Children’s Advisory Network (iCAN), a global consortium of children’s advisory groups.
Work That Existing Groups Have Done
In addition to providing consultation to clinical trial protocols and information pamphlet designs, as well as raise awareness of the importance of patient and public involvement in clinical trial design processes, existing groups have also developed/participated in projects of their own:
Developed by the young advisors of KidsCan, MobileKids was a project designed to encourage physical activity in kids aged 8 through 13 years with the use of mobile technology.
Led by researchers at the Hospital for Sick Children in Toronto, Canada, these projects developed guidelines, through a systematic process, that aim to standardize reporting of clinical trial protocol and trial reports across pediatric studies. Participants from KidsCan and KIDS Connecticut attended the consensus meeting of international researchers to aid in the finalization of the checklists.
Members of US, Canada, and UK young advisors provided survey responses to a project looking to evaluate current practices, challenges, and unmet needs associated with the achievement of pediatric assent for clinical trials.