Health activism and the logic of connective action. A case study of rare disease patient organisations

摘要: This exploratory work investigates the role of digital media in expanding health discourse practices a way to transform traditional structures agency public health. By focusing on sample rare disease patient organisations as representative contemporary activism, this study communication development (1) bottom-up sharing and co-production knowledge, (2) engagement dynamics (3) information pathways. Findings show that affordances for go beyond provision social support communities; they ease one-way, two-way crowdsourced processes knowledge sharing, exchange co-production, provide personalised routes bolster emergence varied pathways where experiential medical authority are equally valued. These forms organisationally enabled connective action can help surfacing personal narratives strengthen communities, production relevant wider an informational eventually cultural context eases patients’ political action.