Project Description
Challenge
It is no secret that there is often a gap between published evidence and the support that children with neurodevelopmental disabilities receive. For years, many researchers have struggled with how to translate knowledge into impact and have often carried out research without keeping this in mind. What resulted was a multitude of research and a wealth of knowledge that was virtually inaccessible to those who needed it.
Project Summary
Knowledge translation (KT) is about ensuring that new scientific knowledge has an impact on the lives of children and their caregivers. It’s also about ensuring that it “translates” into a better healthcare system, practical and accessible interventions, fair policies, useful technologies, accurate public perceptions, improved health, and better quality of life.
This concept requires creating opportunities for stakeholders (doctors, government, non-profits, patients) to hear about relevant information and to understand how to apply it. It also means allowing researchers to learn from these groups about what they know and need.
The Knowledge-Translation Core at KBHN was responsible for identifying the needs of stakeholders, supporting collaborative research and helping researchers move their findings into policy and practice. The KT Team surveyed the network’s members in 2017 and learned that while many of them used commonplace strategies such as presenting their work at scientific conferences, few were yet familiar with “integrated knowledge translation” (iKT). iKT refers to when families and other end users get to engage with the research as it unfolds. Among other resources, the Project Lead, David Phipps, and the Knowledge Translation Manager, Anneliese Poetz, created an iKT toolbox designed to guide researchers in weaving KT into a project from day one, rather than thinking about it as an “add-on” after the project is complete.
Result
One of the toolbox’s first applications was the network’s Autism Demonstration Project. The KT Core helped the investigators to understand parents’ expectations for how autism biomarkers would be used in healthcare. Around the same time, they helped the CP team to explore the disconnect between how patients and their families understood stem-cell therapy and the real state of the science.
The KT team’s other contributions included developing “Research Snapshots” to make study results more accessible to non-scientists. They also participated in outreach activities such as Brain Awareness Week and Day on the Hill, a yearly event when network personnel meets with members of parliament, senators and other policymakers.
Team
Investigators
Project Leaders
Nazeem Muhajarine, University of Saskatchewan (2010-2013)
David Phipps, York University (2013-2019)
Jan Willem Gorter, McMaster University (Family Engagement) 2015-2019
Keiko Shikako-Thomas, McGill University (International Policy Dialogue on Childhood Disabilities) 2015-2019
Knowledge-Translation Managers
Patricia Fortin, NeuroDevNet (2010-2011)
Mayada Elsabbagh, McGill University (2011-2013)
Anneliese Poetz, Kids Brain Health Network (2013-2019)
Collaborators, Consultants and Staff
Fleur Macqueen Smith, University of Saskatchewan (2010-2013)
Marianne Chomiak, NeuroDevNet (2011-2013)
Partners
Norlien Foundation (co-funded KT core activities 2010-2013 with Sask team)
CanChild
