Living for the 'gram: analysing the online footprint of lupus using a qualitative social media listening tool.

OBJECTIVES

Systemic lupus erythematosus (SLE) significantly impacts patients' lives beyond the traditionally chased outcomes of mortality and organ damage. Increased access to social media has aided health information dissemination, but a gap remains between patient and physician perspectives. This study explores the online trends on SLE to identify the overall theme of community engagement.

METHODS

An online social listening tool (Brand24) was utilised by two rheumatologists in this cross-sectional study to search for keywords related to lupus and diabetes. Data on reach, engagement, themes and sentiments were extracted over 3 months between June and September 2024. Ethical considerations were maintained by accessing public domain data, and thematic content analysis was performed.

RESULTS

Content on SLE had an expectedly lower number of mentions compared to diabetes (85,662 vs 405,000), but with a substantial reach (289 million). User-generated content formed most of the lupus-related discussions online, and sentiment analysis revealed a higher proportion of positive connotations on SLE topics (21% vs 11%). Key themes in SLE were related to the burden of chronic illnesses and celebrity influences. Unsurprisingly, unverified sources of online content had a notable influence on the themes, too.

CONCLUSION

Despite the low prevalence, the online footprint of SLE is quite notable. Discussions and themes range from personal experience to online support. Celebrity voices and unverified sources can shape social media content. These findings highlight the need for healthcare professionals to think of social media strategies to minimise misinformation and provide credible guidance. Key Points • Mentions of lupus have a surprisingly strong online presence, more than its prevalence would suggest. • Celebrities and unverified sources often shape the online narrative on lupus. • The tone of lupus-related posts is more positive than expected, revealing patient identities centred around resilience and community.