Parents Participating in Research

A new paper published in the Journal of Medical Internet Research describes how CanChild researchers and parents of children with disabilities worked together to build a remarkable online community and innovative partnership. ​​

When approached for feedback about establishing a new research advisory committee for CanChild, parent adviser Jennifer Sprung proposed a novel idea. Why not connect with families in a convenient and accessible place where families already gather: online?  

"Parents Participating in Research" (PPiR) launched as a private Facebook group in June 2014, with the goal of exploring social media as a platform to enhance parent-researcher partnership and encourage knowledge exchange. It very quickly developed into what Sprung, now the PPiR Community Manager, describes as a "vibrant and busy community where there is never a shortage of discussion."

Knowledge Exchange and Discovery in the Age of Social Media: The Journey from Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability details the stages of building an effective online health community and discusses challenges and strategies for moving communities forward. Much like the PPiR community itself, the publication is a product of close collaboration and was co-authored by both researcher and parent members.

CanChild researchers interested in joining the PPiR Facebook group are encouraged to contact Andrea Cross for more information. 

Authors: Russell DJ, Sprung J, McCauley D, Kraus de Camargo O, Buchanan F, Gulko R, Martens R, Gorter JW.  J Med Internet Res. 2016 Nov 11;18(11):e293. [Open Access]

Access and download the article for free.