Issue-networks as omitted publics in the construction of #rarediseaseday discourse

Abstract

Background: Over 450 million people worldwide have a rare disease. Yet despite healthcare policy rhetoric placing an onus on inclusive public engagement, rare disease publics are often engaged as data sources or product/service consumers. Meanwhile, various rare disease actors congregate around ‘Rare Disease Day’ each year – a global event with various online and offline talks, workshops, and sessions. In 2021, ~4.3 million tweets marked Twitter as a locus of exchange for the event. Methods: To examine public discourse around the event, the paper draws on social network and qualitative analyses of 40,366 Twitter tweets/retweets about rare disease day 2021 posted between 10-Feb-2021 and 10-Mar-2021, analysing them through a controversy theory lens. After identifying particularly influential Twitter users and groups, the paper examines their textual and visual communication strategies. Results: It funds three distinct orientations to rare disease discourse on Twitter (mission, awareness, and actor). In doing so, the paper locates a gap in direct engagement between medical authority and patients. Conclusions: It suggests that each orientation towards the discourse around rare disease day 2021 might be used by policymakers and researchers to engage with rare disease publics on social media in a more inclusive way as a pathway to better healthcare provision.