The Waterlupus Hack Experience

Monday, June 17, 2019
by Francesca Cardwell

“What’s a hackathon?”

As we shared our research plans with colleagues and potential participants, we were asked this question many times over the last 6 months! Even after spending so much time learning what to expect through the planning process, the hackathon experience and its outcomes exceeded my expectations.

Health hackathons are multidisciplinary events that bring together a diverse group of stakeholders to solve key health challenges through a process of co-creation – the term itself combines ‘hack’ (i.e., a solution reached through innovation) and ‘marathon’ (i.e., an event of defined length and concentrated effort), emphasizing the rapid development of small but scalable solutions that can be expanded following the event.

In the context of systemic lupus erythematosus (SLE), an autoimmune disease in which the immune system mistakenly attacks the body’s own tissues and organs, affected individuals and their families experience considerable economic challenges. SLE is particularly unique, as it is gendered (it impacts females at a ratio of 9:1), idiosyncratic, episodic and racialized, and no two individuals’ experiences of SLE symptoms and diagnosis are the same. Further, the unpredictable health care costs and the struggle to maintain regular employment impacts self-esteem and career trajectories. Previous research has shown that patients often pursue a less satisfying working life, yet knowledge regarding interventions to improve employment outcomes among those with SLE is limited. To effect change we therefore need to look beyond individual and workplace interventions and focus on systems-level actionable interventions. For this reason, we recently hosted the Waterlupus Hack (May 24-25, 2019), to develop specific and innovative interventions through engaging key stakeholders (lupus advocacy organization representatives, researchers, physicians, individuals with lived experience) and students in Waterloo, Ontario.

Waterlupus Hack poster

In planning the Waterlupus Hack, we were so fortunate to partner with the GreenHouse, a social innovation community based out of St. Paul’s University College at the University of Waterloo. The team at the GreenHouse was an invaluable resource, as they have previous experience both planning and executing successful hackathons. The GreenHouse led the student recruitment, while our Research Team reached out to potential mentor participants to invite them to share their experiences at the event. Naming the Hackathon was unexpectedly collaborative, as one of our mentor participants coined the weekend ‘Waterlupus’ as we were finalizing travel plans; right away we knew this was a great name for the Hack!

Entrance to the GreenHouse at the University of Waterloo

To kick off Waterlupus on May 24th, one of the mentor participants talked about her lived experience of SLE. This 5 minute introduction really engaged both the mentors and students, and helped participants gain a deeper understanding of the economic challenges related to living with SLE. To this end, the GreenHouse also facilitated a ‘World Café’, whereby student participants discussed a series of challenging questions with the lived experience mentors. Participants were enthusiastic about this event, and the questions (e.g., How has lupus affected your economic quality of life in the past, present or future? What ideas do you have to address some of these challenges?) generated some really engaging discussion.

Emily Shantz speaks to students about research

In addition to a number of unique workshops held to support the hackathon teams (e.g., Deep Dive into the Research, Policy Overview, Pitching Tips), the majority of time on May 25th was used as an informal working period, during which the teams could discuss their ‘hacks’ with the mentor participants. Not only was this productive for the teams to receive feedback from mentors, but the mentors spoke highly of their experiences engaging with enthusiastic and innovative students.

At the end of the working period on the 25th, five teams pitched their ideas and the judges deliberated for over half an hour before choosing the winner and runner up. Our runner up was called Team Purple, who pitched their social network platform for individuals with SLE to access relevant information and resources, share their experiences, and ask questions in a professionally-moderated environment. The winning team was called Shine On, who pitched their idea to collaborate with non-specialized brands to increase both the accessibility and affordability of sun protective clothing suitable for a range of events and environments, including work and school. This team will be moving forward in the Workplace Innovation Program with the support of the GreenHouse and other key stakeholders.

Slide of the judging criteria
'Shine On' team presents their leading solution

Not only did the hackathon participants develop five innovative solutions, but a number of additional positive outcomes came out of the event. First, our mentor participants were impressed with the enthusiasm of the students, and described the positive experience associated with spending a weekend with intelligent, enthusiastic and excited young innovators. Similarly, a number of mentors described the unique experience of being in the same room with other mentors from across the country. For example, we had mentors from advocacy organizations from the provincial (i.e., Ontario, Alberta) and national levels (i.e., Canada, United States), and patients from multiple Canadian provinces. Mentors also reported the benefits associated with networking, and the informal support networks generated from the hackathon.

Hackathon organizers and speakers clap at the conclusion of the event

Now that the excitement of the hackathon weekend has subsided, we are reflecting and considering the path from here. As a result of Waterlupus, we have multiple teams who are excited to move forward in collaboration with the GoHelp Lab and the GreenHouse Workplace Innovation Program on their proposed solutions. We are excited to see where the next steps take us!

Follow our research progress! @SLEUWaterloo