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.
Dianne J RussellJennifer SprungDayle McCauleyOlaf Kraus de CamargoFrancine BuchananRoman GulkoRachel MartensJan Willem GorterPublished in: Journal of medical Internet research (2016)
The PPR community grew from inception to an established community with active engagement and knowledge exchange. Both parents and researchers described valuable experiences. Researchers should consider social media as a means of engaging families in all phases of research to ensure that research and its outcomes are meaningful to those who need it most.