Lupus is a tricky illness that looks very different in different people, but one key similarity is that the disease can have significant effects on the working life of those living with lupus, with related economic impact.
Improving the working lives of individuals with lupus is the focus of a project coming out of the University of Waterloo’s Geographies of Health in Place Lab (GoHelP Lab), in collaboration with researchers at the University of Calgary and Queen’s University. This integrated knowledge translation project, led at UW by Professor Susan Elliott and Francesca Cardwell from the Department of Geography and Environmental Management, looks to use the findings from previous research activities to develop specific and actionable systems-level interventions.
Enter GreenHouse and an unconventional hackathon model.
On May 24-25, 2019, graduate and undergraduate students from across the University of Waterloo and from as far as away as the University of Toronto gathered at St. Paul’s University College for a two-day hackathon— called Waterlupus Hack -- where they developed innovative solutions to enhance the working lives of those living with lupus.
Cardwell calls the event a “fortunate collaboration,” noting that none of the researchers had previous experience planning a hackathon, while the vast majority of the students in attendance were not familiar with lupus, a disease that affects one in thousand Canadians, 90% of them female.
On the first evening, researchers introduced their work on lupus before the students rotated between tables with mentors who either live with lupus themselves or work for lupus organizations. Students had the opportunity to ask the mentors questions about how lupus affected economic quality of life and what that economic quality of life meant to them. This was followed by team formation and workshops on research and ideation.
Throughout the second day of the hackathon, the teams continued to work with the mentors to be sure their ideas were addressing real world challenges and needs. They also participated in workshops on policy and pitching before having the opportunity to pitch their projects to a panel of judges.
Joyce Lu, a third year Accounting and Financial Management student who is part of GreenHouse’s Workplace Innovation Program, participated in the hackathon, with her team coming in second. Although Joyce had had a friend in high school with lupus, she learned a lot about the illness through gaining new perspectives at the hackathon, recognizing the challenge of finding a positive and informative online community space for those with lupus to share information about resources.
While Joyce’s team came in second – with first place going to Shine On (Sagar Patel, Ece Uereten), a team focused on developing fashionable and affordable UV-protective clothing for people with lupus – the event itself demonstrated the need for community. As an unintended consequence of the hackathon, Cardwell says that many of the mentors living with lupus were delighted to meet one another and planned to stay in touch.
The prize for both the winning team and the runner-up is the opportunity to continue to work with the GoHelP Lab and GreenHouse’s Workplace Innovation Program. Excited about the innovations being developed, lupus advocacy representatives also expressed their support as ongoing mentors to the project.
GreenHouse Discovery Lab Coordinator and one of the event organizers Anne Filion says, “All the participants were really engaged and clearly cared about what they were making, to make sure it was helpful and useful.”
Francesca says, “From our perspective, it was so valuable partnering with GreenHouse because they had the experience we didn’t have. So many of our mentors commented that they were impressed with the students’ enthusiasm. It was great to have students interested in the mentors’ experiences, and enthusiastic to take action on this challenge.”
Joyce Lu and her team are eager to continue to try to make a difference and says, “This hackathon was really beneficial.”
(Left to right): Sagar Patel (student), Ece Uereten (student), Cassie Myers (Judge, GreenHouse Alumnas), Dr. Jenna Dion (Judge, University of Waterloo), Vinita Haroun (Judge, Lupus Society).