Letter of information

Enhancing the working lives of individuals with systemic lupus erythematosus

Researchers from the University of Waterloo, University of Calgary, and Queens University are hosting a research hackathon related to enhancing the working lives of individuals affected by SLE (Systemic lupus erythematosus). We are writing to provide you with information about the research and to invite you to participate. We are looking to involve a range of stakeholders to serve as resource people in the hackathon process, including individuals impacted by SLE, policy makers, members of lupus organizations in Canada. Undergraduate and graduate students from the University of Waterloo community will also be centrally involved.

The event involves a two-day hackathon, taking place at the University of Waterloo on Friday May 24thfrom 3-9pm, and Saturday May 25th from 9:30am to 7pm. Hackathons aim to engage the community, generate passion, and bring together participants from a range of backgrounds to collaborate and develop solutions to complex problems. Undergraduate and graduate student participants will be placed into small groups in order to generate ideas and develop innovative social solutions to enhance the working lives of those impacted by SLE. We hope to have a range of key stakeholders in attendance to act as resource people and offer their advice, share their experiences, and support the students as they progress through the hackathon. Your contributions from this research will be used to improve the working lives of people affected by SLE in Canada.

Event schedule

The hackathon will take place at the GreenHouse, St. Paul’s University College, University of Waterloo. On Friday May 24th(3pm-9pm), participants are invited to attend pre-hackathon briefing presentations related to previously completed qualitative and quantitative research. These presentations will help contextualize the hackathon and the need to develop non-pharmacological interventions to improve the economic lives of individuals with SLE. These presentations will also be available online if you are unable to attend the afternoon portion of this event.

In addition to an organized dinner on May 24th, we will be hosting an informal World Café, whereby key stakeholders (lupus organization representatives, individuals with lived experience, physicians) will informally discuss their experiences of SLE with student participants. This will give students the opportunity to learn from those with lived experience with SLE, and ask questions related to SLE in the workplace.

On Saturday May 25th(9:30am-7pm), participants will be briefed on how the hackathon will proceed and be placed into smaller working groups. At the end of the day, groups presenting their proposed solutions will be adjudicated by designated lupus organization representatives; the prize for the winning team will consist of the opportunity to continue working on their solution under the supervision of a University of Waterloo researcher, and in collaboration with a lupus organization in Canada.

Parking will be covered for hackathon participants who park on campus. In addition, refreshment breaks and dinner on May 24th, and breakfast, lunch, dinner and refreshment breaks on May 25th will be provided for all participants.

There will be a designated quiet space in close proximity to the GreenHouse space should any participants wish to step out of the event or take a break. If you have any questions about the hackathon process or the event itself, please do not hesitate to follow up with Francesca Cardwell (fcardwel@uwaterloo.ca).


Participation in this research is voluntary, and throughout the event you will interact with other members of the SLE community (e.g., policy makers, physicians, researchers). In advance of the hackathon, you will be emailed a Consent Form to complete. The Consent Form will also be supplied and reviewed upon arrival. You may decline to participate in any component of the event and you may withdraw at any time without any negative consequences by advising the researcher. Information generated throughout the hackathon will be shared amongst the research team, however no identifiable information will appear in any report resulting from this study. The only people that will have access to the collected data will be the Research Assistant and other members of the Research Team. Following analysis, a summary report of the data will be shared with any interested participants and lupus organizations in Canada. In addition, results will be published in a peer-reviewed journal. There are no known or anticipated risks to participation in this study.

Benefits of participation include the opportunity to share your experiences, collaborate with others interested in the issue, and help brainstorm possible innovative solutions to enhance the working lives of those with SLE. Your responses will help improve the working lives of people affected by SLE in Canada. Following the hackathon, collected data will be retained for a minimum of one year, and will be stored on an encrypted laptop and on a USB that will be kept in a locked cabinet in the Research Assistant’s office.

If you have any questions, please get in touch with Susan Elliott (elliotts@uwaterloo.ca) or Francesca Cardwell (fcardwel@uwaterloo.ca). Other members of the research team include Dr. Ann Clarke of the University of Calgary, and Dr. Elijah Bisung of Queens University. Thisstudy has been reviewed and received ethics clearance through a University of Waterloo Research Ethics Committee (ORE #40295). If you have questions for the Committee, please contact the Office of Research Ethics at 1-519-888-4567, Ext. 36005, or ore-ceo@uwaterloo.ca.


Susan J. Elliott, PhD
Professor, Geography
University of Waterloo

Ann Clarke, MD
Professor, Medicine
University of Calgary

Elijah Bisung, PhD
Assistant Professor
Health Studies, Queens University

Francesca Cardwell, PhD
Research Assistant
University of Waterloo