“Nothing about us without us!” is a motto for patients as members of research teams. Recent advances in technology are creating new ways for the public to share their health data so that researchers can identify new and more relevant questions for research.
This project, guided by the concepts of citizen science (the public participating in science), has developed an online app that enables the public to share:
The Citizen Science website went live in 2019. We have worked with patient groups such as the ILC (Improving the Lives of Children) Foundation, Pain BC, Complex Regional Pain Syndrome Canada, and various community pain groups across Canada to promote the website. Also, Pain BC and the Arthritis Society are supporting in sharing this initiative amongst their members. This platform is also now featured on the government of Canada Citizen Science portal as the only health citizen science project of this kind.
To date, Citizen Science has interacted with 1,234 visitors across Canada and around the world; 434 Canadian have filled out some of the pain surveys. Of those, 18 visitors participated in an interview with us. We have used their valuable feedback to develop interactive graphs and charts for the public to “see” the data—Version 2 was launched in December 2021.
“Citizen Science: big data, big idea”. Canadian Arthritis Research Conference. Victoria, BC. February 25 – 26, 2020.
“Consumer digital tools: friends or frenemies” Western Alliance for Rheumatology Meeting. Kelowna, BC. June 1, 2019.