Grant: Planning and Dissemination Grant - Institute Community Support

Systemic lupus erythematous (SLE) is a chronic inflammatory autoimmune disease affecting multiple organs and tissues in the body. With debilitating symptoms of an episodic nature, living and coping with SLE presents significant physical, mental, and economic challenges. Dr. Clarke and Dr. Elliot recently employed a mixed-methods approach to examine the economic impacts of SLE, which demonstrated those living with SLE often experience substantial direct and indirect costs, as well as altered career trajectories that are often less satisfying and financially stable due to poor public understanding of the disease, limited workplace accommodation, and flawed government policies. Stakeholder workshops were then held to review and interpret research findings, and identify priority areas to target change. Key issues included difficulty accessing disability benefits and navigating insurance systems. Findings from these research activities suggest the need to focus on system level interventions (i.e. government, policies and society interventions) that address overarching issues identified in the research to date, including disability support, supports for navigating systems (i.e. health care, insurance), access to medical specialists, and general public awareness of SLE. This proposal aims to build on these previous research findings through a planning meeting that will establish partnerships and leverage expertise between key stakeholders, including those living with lupus, lupus organizations, policy makers, and union representatives, in order to develop a viable strategic plan for the design, implementation, and evaluation of specific, relevant and actionable system level interventions that will have a positive and practical impact on the lives of those affected by SLE in Canada. The meeting will form the basis of future funding applications to establish this team of stakeholders as a working group for the implementation and evaluation of the outlined interventions.