Autism community connects: A co-design web-platform to facilitate the uptake of research evidence by families

Principal Investigator: 
Award Type: 

Co-leads:

  • Suzanne Lewis
    Pacific Autism Family Network / University of British Columbia
  • Dawn McKenna
    Pacific Autism Family Network

Team member:

  • Caylee Raber
    Emily Carr University

Trainee:

  • TBC

The objective is to support research dissemination and knowledge translation in the autism spectrum disorders (ASD) community by co-designing a web-platform that will facilitate the uptake of research evidence by families and individuals with ASD. This platform will link research users to credible sources of information, research, and services by acting as a knowledge broker and research wayfinding system.

ASD is a growing condition impacting society in profound ways; it is the most common neurological disorder in children, affecting approximately 60,000 people in BC. There is an urgent need for a more fulsome approach to the dissemination of knowledge to families about best practices, new research, evidence-based treatments and support. Families are essentially left to their own devices to make critical decisions about what services are most beneficial for their child and hence where best to direct their funding. This is critical because the earlier treatment is started, the better the outcome.

The Pacific Autism Family Network’s (PAFN) mandate is to be a Knowledge Centre of Excellence: bringing together state of the art resources for research, information, learning, assessment, treatment and support across BC. Since 2015, PAFN has collaborated with the Health Design Lab (HDL) at Emily Carr University to better understand the communication challenges and needs of researchers and families in the ASD community. Through this collaboration in 2016/17, it was found that access to reliable and credible research for families is a significant challenge due to barriers including time, money, location, language and format. To improve knowledge exchange, researchers and families identified the need for a web-platform that will curate credible ASD research for families and disseminate it through more diversified and accessible communication modes.

To meet this challenge of co-designing the web-platform, workshops with the ASD community will be held. Based on input from researchers and research-users, the HDL will design and prototype a web-platform. This will facilitate knowledge exchange and support research users (families and self-advocates) in making informed decisions based on best-practice research. It will also enable researchers to connect with families to support their research endeavors creating direct linkages and ongoing connectivity with the ASD community.

Host Institution: 
University of British Columbia Okanagan
Year: 
2017