Twitter networks, bridging nodes, and issue-mapping on rare disease

Over 300 million people worldwide have a rare disease defined in most territories as a long-term health condition affecting fewer than 1 in 20,000 people. Despite healthcare policy rhetoric placing an onus on inclusive public engagement, rare disease publics are often engaged instrumentally as data sources (i.e., real-world evidence) or as product/service consumers. On the last day of February each year, various rare disease actors congregate around ‘Rare Disease Day’ – a global event intended to raise awareness and bring together the rare disease community. In 2021, many interactions took place online (owing to pandemic restrictions) with ~4.3 million tweets marking Twitter as a locus of exchange and dialogue for the event, thus offering potential for inclusive public engagement in policy. This talk covers social network and qualitative analyses of discourse in 40,366 Twitter tweets/retweets about rare disease day 2021 that were posted between 10-Feb-2021 and 10-Mar-2021, taking a digital methods approach and adopting a controversy analysis lens. It explains how the analyses led to a particular set of rare disease issue-networks being identified around the event, and the importance of centrality measures and bringing nodes in doing so. The talk then explains how analysing the communication strategies of different issue-networks revealed three distinct orientations to the construction of rare disease discourse on Twitter (mission, awareness, and actor). The talk adds that each orientation might be used by policymakers and researchers to engage with various rare disease publics on social media in a more inclusive way, leading to better healthcare provision.

Dr Matthew S. Hanchard is a digital geographer with interests in digital media and society, data science/critical data studies, medical sociology, visual sociology, urban sociology, and awkward multimodal methodologies. He currently works as a Research Associate at the University of Sheffield (UK) iHuman Institute, with previous work spanning film audiences, transport mobilities, smart cities, and digital maps.

E-mail: m.s.hanchard@sheffield.ac.uk

ORCiD ID: 0000-0003-2460-8638

Twitter: @MatthewHanchard / @orphanisation