Non-pharmacological interventions to improve the socioeconomic lives of individuals with SLE

Dr. Ann Clarke, University of Calgary, Calgary, Alberta

Dr. Susan J. Elliott, University of Waterloo, Waterloo, Ontario

Dr. Francesca S. Cardwell, University of Waterloo, Waterloo, Ontario

Principal: Dr. Ann Clarke

Team members: Dr. Susan Elliott, Dr. Francesca Cardwell, Dr. May Choi, Dr. Elijah Bisung, Dr. Jenna Dixon

Hacking systemic lupus erythematosus (SLE): In May 2019 we hosted the Waterlupus health hackathon in Waterloo, ON. Waterlupus engaged stakeholders (advocacy organizations, patients, policy makers) to develop non-pharmacological interventions to improve the economic lives of SLE patients, increase public understanding of SLE, and establish partnerships between stakeholders.  Funding source: Lupus Canada

We are now conducting a study assessing how SLE patients access health information pre and during COVID-19, to inform future delivery of accessible health information, minimize risk of illness and meet patient needs.

Outcomes of the Waterlupus hackathon, published July 2020 in Health Promotion and Chronic Disease Prevention in Canada, outlines the results of the Waterlupus health hackathon.  Summary and further information on our hackathon: https://uwaterloo.ca/geographies-of-health-in-place/events/lupus-hackathon

Our current study is an online survey of Canadian and international SLE patients that will assess access to information. In-depth interviews with patients, physicians, and advocacy associations will help more fully understand the types of information sources patients trust, and how they share/use information to manage their disease.  Data collection for this study is ongoing and will enable us to understand how and why SLE patients navigate health information during a public health crisis, and more aptly serve this community now and in the future.