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iCAN Youth Council Abstract Selected for Southeastern Pediatrics Research Conference

Atlanta, May 3, 2019 - The International Children's Advisory Council (iCAN) Youth Council, led by Vivian Tsang, produced an abstract on the involvement of youth

Vivian Tsang, iCAN Youth Council , KIDS Canada

within pediatric research and healthcare using the platform of youth councils and/or advisory groups, such as iCAN.

The Southeastern Pediatrics Research Conference to be held on June 19th, 2019 at the Georgia Aquarium, focuses on Metabolomics and Childhealth, is sponsored by the Pediatric Research Alliance.

From Tsang, "increasing demands from public and private healthcare coupled with national initiatives in patient-oriented research encourages patients to be more directly involved in the research process. The push towards child and youth participation in research resulted in the formation of paediatric patient advisory groups with broad partnerships and consultations requests worldwide. However, there is a lack of evidence that examines the challenges in formation and training of young persons’ advisory groups (YPAGs) and management process involved thereafter. This study’s purpose is to document YPAG formation and training protocols around the world, highlight common strengths, and evaluate pitfalls and challenges. The results from this study will subsequently inform the development of standardized training protocols for children and youth to be piloted globally. 17 select YPAG team leaders from 7 countries were surveyed to determine their current training techniques. 17 youth and 15 team leaders were then interviewed to gather further qualitative data on facilitators and barriers that aid or prevent successful initiation and maintenance of these groups. Qualitative interview data was coded and analyzed using NVivo." Tsang further shared, "the most common training topics include consent and assent (64.71%), clinical trials (64.71%), and patient safety (70.59%). Most YPAGs receive no formal training (58.82%) while training sessions in the remaining 7 groups vary in both duration and frequency. Collectively, meetings ranged from 15 minutes to 6 hours long, with the majority of team meetings being 2-3 hours long (58.82%). The most common training facilitators are a positive relationship with a local hospital (82.35%) and access to a dedicated team coordinator (64.71%). The most common barrier identified by 70.59% of team leaders is the lack of access to appropriate educational materials. Bringing children and youth to the forefront of paediatric trials and clinical research facilitates appropriate patient representation in subsequent research decision-making. There is an urgency to create standardized protocols for the training of children and youth, especially in preparation for national and international research consultations. Recommendations are suggested based on the goals, training, support, and contractual arrangements necessary for successful YPAG initiation and maintenance."

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