Health information communication and advocacy in the haemophilia community: an X-based analysis

Purpose: This study evaluates the network characteristics of the haemophilia community on X (previously known as Twitter) and identifies prevalent themes in their conversations, informed by the Uses and Gratifications (U&G) theory, within the broader context of information systems and communication studies. Design/methodology/approach: The study analysed 50,859 posts from 16,737 users over six months in 2022. Social network analysis and LDA-assisted qualitative techniques were applied to explore the network dynamics and prevalent thematic discourses within the haemophilia community on X. Findings: The research explores the significant role of social media platforms like X as essential tools for healthcare communication and advocacy, specifically for the haemophilia patient community. The study emphasizes X’s value in supporting patient care, sharing research and driving advocacy efforts. Social implications: The study shows how social media can be an important resource for people with chronic and rare diseases, offering them a space to share experiences, find emotional support and access health information. This is especially important for those with rare conditions as haemophilia, where traditional support networks might not be as easily available. Originality/value: These findings can provide useful insights for healthcare professionals, system designers and researchers, showing how X can help improve patient engagement, healthcare services and advocacy efforts. The study also shows how social media can be an important resource for people with chronic and rare diseases, offering them a space to share experiences, find emotional support and access health information.