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Patient data as medical facts: social media practices as a foundation for medical knowledge creation

Kallinikos, Jannis ORCID: 0000-0002-4446-2878 and Tempini, Niccolò (2014) Patient data as medical facts: social media practices as a foundation for medical knowledge creation. Information Systems Research, 25 (4). pp. 817-833. ISSN 1047-7047

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Identification Number: 10.1287/isre.2014.0544


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.

Item Type: Article
Official URL:
Additional Information: © 2014 The Authors
Divisions: Management
Subjects: R Medicine > RA Public aspects of medicine
Date Deposited: 10 Nov 2014 13:11
Last Modified: 29 May 2024 00:00

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