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

Author List: Kallinikos, Jannis; Tempini, Niccol˜; Economics, London School of;

Information Systems Research, 2014, Volume 25, Issue 4, Page 817-833.

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

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List of Topics

#196	0.250	health healthcare medical care patient patients hospital hospitals hit health-care telemedicine systems records clinical practices physician electronic physicians longitudinal outcomes
#144	0.138	knowledge transfer management technology creation organizational process tacit research study organization processes work organizations implications practice explicit models consultants transfers
#6	0.132	data used develop multiple approaches collection based research classes aspect single literature profiles means crowd collected trend accuracy databases accurate
#221	0.094	competence experience versus individual disaster employees form npd concept context construct effectively focus functionalities front-end knowledge-intensive stage explores set definition
#249	0.075	network networks social analysis ties structure p2p exchange externalities individual impact peer-to-peer structural growth centrality participants sharing economic ownership embeddedness
#269	0.050	participation activities different roles projects examined outcomes level benefits conditions key importance isd suggest situations contextual furthermore benefit levels focus