Digital orphans: Data closure and openness in patient-powered networks

摘要: In this paper, we discuss an issue linked to data-sharing regimes in patient-powered, social-media-based networks, namely that most of the data patient users share are not used research scientific issues or voice. This is a trivial issue, as participation these networks openness sharing, which would benefit fellow patients and contributes public good more generally. Patient-powered often framed disrupting agendas industry. However, when accessible for research, their epistemic potential denied. The problem business models organisations managing networks: centred on controlling tend close with regard use. constraint at odds ideals open supportive community networks’ own narratives evoke. kind failure can create peculiar scenarios, such emergence ‘digital orphans’ Internet research. By pointing out use, paper informs discussion about capacity patient-powered support