Who can you trust? Investigating access and trust in health information during COVID-19 for individuals with lupus

Keywords: COVID-19, Systemic Lupus Erythematosus, Mis/Disinformation, Infodemic, Survey Research
Session Type: Virtual Paper Abstract
Day: Sunday
Session Start / End Time: 2/27/2022 03:40 PM (Eastern Time (US & Canada)) - 2/27/2022 05:00 PM (Eastern Time (US & Canada))
Room: Virtual 40

Abstract

The spread of COVID-19 mis/disinformation is especially serious for individuals with chronic diseases like lupus, and conflicting and/or unfounded information spread through the news/social media can complicate a patient’s health decision making and exacerbate stress. We assessed how an international sample of lupus patients access and trust health information pre and during COVID-19. Patients with Systemic Lupus Erythematosus (SLE) (n=1935) were recruited from 18 research cohorts and five advocacy organizations in Asia (n=201), Canada (n=845), Europe (n=324), Latin America (n=118), and the US (n=447). Participants completed an online survey from June 2020-September 2021 regarding the sources of health information they accessed in the 12 months preceding (pre-03/11/2020 – the date the World Health Organization declared a pandemic) and during the COVID-19 pandemic (post-03/11/2020). We calculated the percentage of patients accessing each source of information, their preferred sources, and the level of trust in each source. McNemar tests were used to compare frequencies pre and during the pandemic in the Canadian and international samples. Although lupus specialists and family physicians were ranked as the most preferred and trustworthy sources, patients accessed these sources less frequently during the pandemic, and accessed news media, a less trusted source, more frequently. Further, 12.4% of patients in Canada and 17.7% of patients in the international sample reported adverse impacts to health due to accessing news and social media for health information. Results will improve existing information dissemination pathways for vulnerable populations across geographical contexts and enhance public health response during the pandemic and beyond.