Mis/disinformation in a public health crisis: supporting the wellbeing of individuals with lupus through evidence-informed advocacy
 
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1
University of Waterloo, Canada
 
2
University of Calgary, Canada
 
3
McGill University Health Centre, Canada
 
 
Publication date: 2023-04-27
 
 
Popul. Med. 2023;5(Supplement):A1619
 
ABSTRACT
Background and Objective: The spread of false information, unintentionally (misinformation) or deliberately (disinformation), can have serious consequences for trust in public health communication. Exposure to mis/disinformation also presents challenges for individuals with pre-existing conditions like systemic lupus erythematosus (SLE), as mis/disinformation can complicate patient decision-making and exacerbate stress, a potential trigger for SLE flares. The spread of mis/disinformation has been amplified during the COVID-19 pandemic, as emphasized by The Lancet in their report on the ‘infodemic’. Methods: To increase understanding of how individuals with pre-existing conditions access and trust health information, we surveyed an international sample of SLE patients (n=2111) recruited from 18 research cohorts and five advocacy organizations. Respondents completed an online survey regarding the sources of health information accessed in the 12 months preceding (pre-03/11/2020) and during the pandemic (post-03/11/2020). The percentage accessing various sources of information and their level of trust in each source were compared pre- and post-03/11/2020 using McNemar tests. Results: The mean age of respondents was 49 years and 93% were female, which is consistent with the characteristics of those affected by SLE. Adverse impacts to health due to accessing health information through news/social media were reported by 17%. Although lupus specialists and family physicians were the most trusted sources, they were accessed less frequently post-03/11/2020 (specialists: 79% pre vs 70% post; physicians: 57% pre vs 50% post), and news and social media, less trusted sources, were accessed more frequently (news: 53% pre vs 62% post; social: 38% pre vs 41%). Advocacy organizations were less accessed pre (36%) and post (37%) than other less/similarly trusted sources (e.g., news media). Trust in advocacy organizations decreased post-03/11/2020 (59% pre vs 54% post). Conclusions: Exploring how advocacy organizations can better support patients, particularly during times of crisis, is critical to mitigating the adverse impacts of mis/disinformation.
ISSN:2654-1459
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