Supporting the wellbeing of Canadians with lupus: evidence-informed advocacy

The COVID-19 pandemic presents a natural experiment for researchers to discern how lupus patients access, use and trust advocacy organizations. A research team from Calgary, Waterloo, and global lupus clinicians and advocacy organizations undertook an (inter)national quantitative survey to investigate where individuals with lupus attain their health information to inform personal decision making in the face of a crisis such as the pandemic, what sources of information they find most useful, and those they trusted. These data indicate that advocacy organizations like Lupus Canada are less likely to be used and trusted than other sources of information. Lupus Canada will lead a team in the interpretation, dissemination, and translation of these quantitative survey results culminating in a deliberative dialogue to inform better/best practices in the context of evidence-informed advocacy. The objectives are to:

1. In partnership with Lupus Canada, develop lay language documents reporting the results of international surveys related to the sources of and trust in health information conducted by the team, with a particular emphasis on the Canadian data;
2. Engage a pan-Canadian sample of lupus patients through semi-structured qualitative interviews related to their views and interpretations of the lay language reports; and,
3. To undertake a deliberative dialogue with key stakeholders to distill the learnings from the qualitative and quantitative survey data into best practices with and for Lupus Canada in meeting the needs of their constituents.

The economic and social vulnerability of those with lupus was particularly challenged by the COVID-19 pandemic, given concern both about contracting COVID-19 as well as experiencing a lupus flare, often precipitated by stress and anxiety. Infections are a leading cause of mortality in lupus and these individuals may be at higher risk of severe COVID-19. For example, the controversy around repurposing hydroxychloroquine for the treatment and prevention of SARS-CoV-2 infection early in the pandemic led to difficulty accessing these drugs, and adverse physical and mental health outcomes in the SLE population were observed. These levels of uncertainty and anxiety have extended into the vaccination phase of pandemic response.

We intend that the practices and tools developed through this partnership will inform the effective dissemination of public health information for immunocompromised populations and ensure messages are delivered through channels that meet identified needs.