Patient Data as Medical Facts: Social Media Practices as a Foundation for Medical Knowledge Creation

Jannis Kallinikos () and Niccolò Tempini ()
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Jannis Kallinikos: Department of Management, Information Systems and Innovation Group, London School of Economics, London WC2A 2AE, United Kingdom
Niccolò Tempini: Department of Management, Information Systems and Innovation Group, London School of Economics, London WC2A 2AE, United Kingdom

Information Systems Research, 2014, vol. 25, issue 4, 817-833

Abstract: This paper investigates a web-based, medical research network that relies on patient self-reporting to collect and analyze data on the health status of patients, mostly suffering from severe conditions. The network organizes patient participation in ways that break with the strong expert culture of medical research. Patient data entry is largely unsupervised. It relies on a data architecture that encodes medical knowledge and medical categories, yet remains open to capturing details of patient life that have as a rule remained outside the purview of medical research. The network thus casts the pursuit of medical knowledge in a web-based context, marked by the pivotal importance of patient experience captured in the form of patient data. The originality of the network owes much to the innovative amalgamation of networking and computational functionalities built into a potent social media platform. The arrangements the network epitomizes could be seen as a harbinger of new models of organizing medical knowledge creation and medical work in the digital age, and a complement or alternative to established models of medical research.

Keywords: medical practice; medical knowledge; social data; social media; computation; patient participation; networking (search for similar items in EconPapers)
Date: 2014
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Citations: View citations in EconPapers (18)

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Persistent link: https://EconPapers.repec.org/RePEc:inm:orisre:v:25:y:2014:i:4:p:817-833

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