Hacking systemic lupus erythematosus (SLE): outcomes of the Waterlupus hackathon. / Sensibiliser au lupus érythémateux disséminé (LED) : résultats du programmathon Waterlupus.

ABSTRACT

INTRODUCTION: There is a growing literature demonstrating the benefits of engaging knowledge-users throughout the research process. We engaged a multi-stakeholder team to undertake a hackathon as part of an integrated knowledge translation (iKT) process to develop nonpharmacological interventions to enhance the economic lives of people with systemic lupus erythematosus (SLE). The aims of this research were to (1) increase understanding of the economic challenges of living with SLE through stakeholder engagement at a research hackathon; (2) investigate possible interventions to improve the economic lives of individuals affected by SLE in Canada; and (3) document the outcomes of the Waterlupus hackathon. METHODS: Waterlupus was held at the University of Waterloo in May 2019, attended by lupus advocacy organization representatives, researchers, physicians, individuals with lived experience and students. We conducted participant observation with participants' understanding and consent; notes from the hackathon were qualitatively analyzed to document hackathon outcomes. RESULTS: At the conclusion of the 28-hour hackathon event, five teams pitched nonpharmacological interventions to address the economic challenges of living with SLE. The winning team's pitch focussed on increasing accessibility of affordable sun-protective clothing. Other Waterlupus outcomes include increased awareness of SLE among participants, and professional and informal networking opportunities. CONCLUSION: This paper contributes to a limited literature on health hackathons. The successful outcomes of Waterlupus emphasize the value of hackathons as an iKT tool. Research about how knowledge-users perceive hackathons is an important next step.