KidsCan Young Persons’ Advisory Group
The Vancouver-base KidsCan Young Persons’ Advisory Group
Engaging youths in research that is both about and for them helps ensure their unique perspectives provide relevant input to researchers. This can have a meaningful impact on work that will benefit children and youths.
A pilot project to develop a Canadian Young Persons’ Research Advisory Group (YPAG), modeled after a program established for the UK Medicines for Children Research Network (now Clinical Research Network, Children Specialty), was funded by a foundational grant from the Peter Wall Society.
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In the project, hosted at the Child and Family Research Institute (now BCCHR) in Vancouver, youth advisors provide advice to investigators on aspects associated with research studies, such as the design of patient information leaflets; opinions about study websites; format of research ethics consent forms; establishment of participant registries; and, input into study protocols and definition of outcome measures. Young people are exposed to a wide range of research activities, and empowered to know they can ‘make a difference’. A team of Canadian advisors contributed to an international effort, supported by the Global Research in Pediatrics (GRiP) network, to develop a start-up tool. This tool guides the development and operation of YPAGs that will work collaboratively with trialists so young peoples’ insights may be integrated into trial design. This will result in research that “promotes the wellbeing of pediatric participants, is scientifically sound, and has a significant impact on the population it targets.” Towards these efforts, an international YPAG has also been created, and the first International Children’s Advisory Network (iCAN) Summit was held in July 2015 in Washington DC. And finally, an Enpr-EMA working group has been established to determine means by which to guide development of YPAGs in European national and specialty networks.
New National Initiative
The KidsCan Young Persons' Research Advisory Group (YPRAG) is a national initiative in Canada aimed to increase the engagement of paediatric patients in all phases of the research process. Currently, there are no groups operating on the national level to include young patients as advisors in research.
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With this national initiative, Canadian researchers will have access to a unique consultation service to support their research endeavours. This initiative will be especially beneficial for research groups who do not have access to a local consultation group at their hospital, academic centre, or community-based health care facility. The group will meet on twelve occasions in the first year working on activities including but not limited to designing research documents, providing input on the format of research ethics consent and assent forms, and establishing patient-centered research protocols and methodology. Young patients will act as ambassadors to raise awareness of the importance of youth in research and discuss outcomes important for children and young people involved in clinical trials.
This initiative parallels work being done in Europe with the eYPAGnet which works hand in hand with the European Medicines Agency to ensure that youth have a voice in paediatric trials and studies within the EU and the UK. With Europe leading the way and American teams close behind in developing standardized protocols for children and youth involvement in research, there is an added incentive for Canada to support similar endeavors. With a national group such as KidsCan, Canadian researchers can be supported in their paediatric research endeavors.
Recruitment for youth at interested paediatric hospitals is currently occurring across Canada. Teams from Saskatoon, Winnipeg, Calgary, Edmonton, Ottawa, and Vancouver are currently enrolled. Institutions or youth interested in this opportunity should contact the Kidscan national director at firstname.lastname@example.org
KidsCan is currently taking requests to consult on research projects across Canada. Specifically, national paediatric trials and research studies or multi-site projects taking place across provinces are encouraged to apply. KidsCan can also provide letters of recommendation for grant funding and ethics applications. Interested collaborators should contact the KidsCan national director at email@example.com.
Papers on the Importance of Youth and Family Perspectives in Research
Vivian Tsang, National Director: firstname.lastname@example.org
Vivian Tsang has been involved in paediatric patient advocacy for the past eight years. She has served as the Team Lead of a local KidsCan chapter based out of BC Children’s Hospital in Vancouver and on a national scale developing the CHILD-BRIGHT Youth Advisory Panel Steering Committee. She has also directed public-private engagements on the Executive Steering Committee on the International Children’s Advisory Network, a global collaboration with 21 teams in 9 countries working with researchers to improve patient involvement in paediatric research. Vivian is also committed to improving healthcare for children and youth through political action. She served as a member of Vancouver City Council's Children, Youth, and Families Advisory Committee and represented UBC's Faculty of Medicine to advocate for funding for youth mental health resources with various Members of the Legislative Assembly. She has been recognized for this work through the City of Vancouver Award of Excellence in 2017 and most recently an ImpactBC Award in Healthcare Research and Development.