Participatory approaches to explore the burdens of pain: A citizen science project

Pain is a universal experience. While it persists, it affects one's ability to take care of themselves, focus on work, spend time with family and friends, pursue passions, and much more. This burden of pain can significantly lower one's quality of life by impacting their physical, psychological, and social well-being. Whether it is acute pain, i.e. short-term or chronic pain, i.e. long-term pain, it is extremely challenging to understand the experience of living with it as it often may not have any visible signs, i.e. biomarkers. To foster research in the biopsychosocial 'burdens' of pain by engaging community members to share their experiences, the Arthritis Research Center of Canada developed a web-platform called 'Citizen Science.' In this thesis, I describe the participatory approaches used to develop this platform from conception to implementation such that it may inform future patient-oriented research projects.