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dc.contributor.authorTempini, Niccolò
dc.date.accessioned2015-03-24T11:37:44Z
dc.date.issued2015
dc.description.abstractMany organizations develop social media networks with the aim of engaging a wide range of social groups in the production of information that fuels their processes. This effort appears to crucially depend on complex data structures that allow the organization to connect and collect data from a myriad of local contexts and actors. One such organization, PatientsLikeMe, is developing a platform with the aim of connecting patients with one another while collecting self-reported medical data, which it uses for scientific and commercial medical research. Here the question of how technology and the underlying data structures shape the kind of information and medical evidence that can be produced through social media-based arrangements comes powerfully to the fore. In this observational case study, I introduce the concepts of information cultivation and social denomination to explicate how the development of such a data collection architecture requires a continuous exercise of balancing between the conflicting demands of patient engagement, necessary for collecting data in scale, and data semantic context, necessary for effective capture of health phenomena in informative and specific data. The study extends the understanding of the context-embeddedness of information phenomena and discusses some of the social consequences of social media models for knowledge making.en_GB
dc.identifier.citationVol. 31, No. 2, pp. 193 - 211en_GB
dc.identifier.doi10.1080/01972243.2015.998108
dc.identifier.urihttp://hdl.handle.net/10871/16589
dc.language.isoenen_GB
dc.publisherTaylor and Francisen_GB
dc.relation.urlhttp://www.tandfonline.com/doi/full/10.1080/01972243.2015.998108#abstracten_GB
dc.relation.urlhttp://www.tandfonline.com/loi/utis20en_GB
dc.subjectaggregationen_GB
dc.subjectdata-baseden_GB
dc.subjectdistributed scienceen_GB
dc.subjectengagementen_GB
dc.subjectinformation cutivationen_GB
dc.subjectPatientsLikeMeen_GB
dc.subjectself-reportingen_GB
dc.subjectsemantic contexten_GB
dc.subjectsocial denominationen_GB
dc.subjectsocial mediaen_GB
dc.titleGoverning PatientsLikeMe: information production and research through an open, distributed and data-based social media networken_GB
dc.date.available2015-03-24T11:37:44Z
dc.identifier.issn0197-2243
exeter.article-number2
dc.descriptiontypes: articleen_GB
dc.identifier.journalThe Information Societyen_GB


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