Deepening Public Engagement with Chronic Pain Research: an intersectional approach to co-creation

Chronic pain is experienced by over 100 million, with over one in every four Americans, having suffered from pain that lasts longer than 24 hours. Studies show that the experience and treatment of pain is differentiated by the intersections of sex, race and class, which impact the way people are treated, with women patients, patients of color and those from lower socio-economic groups often questioned by doctors, and judged to be either not sick; suffering from an imaginary illness; or experiencing less pain than well-off white males. Multidisciplinary teams of artists, patients and clinicians found that integrating knowledge from their diverse disciplines, and visualizing chronic pain, improved understanding and highlighted tensions and paradoxes within pain encounters between patients and clinicians. This paper discusses the co-creation and presentation of artworks that express pain. Patient experts, specifically women and youth of color living with chronic pain worked collaboratively with experts from multiple disciplines: art, design, music, psychology, neuroscience and naturopathy. We used the PhotoVoice method, popular in feminist social work research, which treats individual participants as experts in their own lives, supporting them to use images and their voices to create works that inform and challenge decisions, strategies, and policy-making. From those projects we created new artworks and designed objects.