Youth engagement in the research enterprise has been growing in prominence over the last number of years. Multiple regional Young Person’s Advisory Groups (YPAGs) have become established not only to raise awareness of research studies that target youth, but to be actively engaged in the research process by providing input into study protocols and influencing research priorities aimed at the pediatric population.
Due to the unique perspective that these groups possess, CHILD-BRIGHT has partnered with KidsCan, the YPAG based out of the British Columbia Children’s Hospital Research Institute. The unique perspective of KidsCan advisors is expected to strengthen the pediatric focus of our Network’s research projects as well provide invaluable feedback on how to more meaningfully engage with youth and build research capacity.
The Training Core has been fortunate to engage with KidsCan over the last few months. In December of 2016, CHILD-BRIGHT collaborated with Can-SOLVE CKD and piloted a module of CIHR’s Patient-Oriented Research workshop (“Introduction to Health Research in Canada”) to a current group of Advisors. The session was intended to solicit feedback on practical strategies that can be employed to make the material more accessible to youth aged 13-18. After piloting the material, an intense hour-long focus group delineated a set of suggested practices that would lead to designing a more interactive and engaging workshop targeted at youth.
In February of 2017, the Training Core had the opportunity to employ the suggested recommendations and design an interactive workshop to orient newly recruited KidsCan advisors to the basic tenets of health care research in Canada. Participants were oriented as to how research projects unfold, how basic biomedical research differs from clinical research, and the role that ethics and peer review play in the process. Through this workshop, participants were further challenged with how the principles of patient-oriented research will play a role in Network-wide research projects to engage patients as partners.
Throughout the training session, it was clear to the facilitator that these youth are not only highly engaged, but strongly committed to having their voices represented at the table to influence research agendas that impact the pediatric population. Together, researchers and representatives from KidsCan will be able to roll out research projects that more meaningfully engage with youth through various stages of the research process.