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Cited by 141Mobile Health and mHealth ApplicationsHealth Literacy and Information AccessibilityMental Health and Patient Involvement

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

Open access
Kallinikos, Jannis, Tempini, Niccolò·2014·Information Systems Research
DOI 10.1287/isre.2014.0544
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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.

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  • Patients' autonomy is restricted by the design of technology and the way it structures how and what type of data patients can produce and share with others.

    “Furthermore, patients' autonomy is restricted by the design of technology and the way it structures how and what type of data patients can produce and share with others (Kallinikos and Tempini, 2014;Tempini, 2015).”

    From The Cultivation of Digital Health Citizenship (2021) · cites this paper as Kallinikos and Tempini, 2014

    The Technological Underpinnings and Organizational Arrangements section says the platform’s data architecture shapes patient interactions, and the Conclusion describes patients recording experiences in standard forms. These passages support the point that technology structures data production and sharing, but the paper also emphasizes patients’ autonomy and the architecture’s openness to new symptom categories; it does not establish the broad claim that patients’ autonomy is restricted. (LLM, conf=0.82)

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  • Big health data could be used for a number of purposes, including clinical research.

    “These big health data could then be used for a number of purposes, including clinical research (Kallinikos and Tempini, 2014;Saukko, 2018;Tempini, 2015).”

    From The Cultivation of Digital Health Citizenship (2021) · cites this paper as Kallinikos and Tempini, 2014

  • Profit oriented platforms, such as Patients Like Me, generate feelings of belonging despite the platform's profit orientation.

    “Indeed, studies have reported how profit oriented platforms, such as Patients Like Me, generate feelings of belonging despite the platform's profit orientation (Kallinikos and Tempini, 2014;Tempini, 2015).”

    From The Cultivation of Digital Health Citizenship (2021) · cites this paper as Kallinikos and Tempini, 2014

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Research works printed but not linked: 2

  1. Van Maanen, J. 1993. Tales of the Field, MIT Press, Cambridge, MA.
  2. Jannis Kallinikos is Professor and head of Information Systems and Innovation Group, Department of Management at the London School of Economics. His research focuses on IS and the governance of organizations. Kallinikos has published widely in IS, Organization Studies and Sociology journals. Recent books include Governing Through Technology: Information Artefacts and Social Practice, Palgrave, 2011 and Materiality and Organizing: Social Interaction in a Technological World, Oxford University Press, 2012 (co--edited with Paul Leonardi and Bonnie Nardi). Address: London School of Economics, Department of Management, Information Systems and Innovation Group, Houghton Street, London WC2A 2AE, UK Email: J.Kallinikos@lse.ac.uk

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Authors
Kallinikos, J., & Tempini, N.
Affiliations
London School of Economics and Political Science (GB)
ORCID
Venue
Information Systems Research
Publisher
Institute for Operations Research and the Management Sciences (INFORMS)
Published
2014-12
Volume
25
Issue
4
Pages
817-833
ISSN
  • 1047-7047 (ISSN-L)
  • 1526-5536
DOI
10.1287/isre.2014.0544
OpenAlex
W2058125993
Cited by
141
References
83
Citations by year
2026: 10 · 2025: 5 · 2024: 16 · 2023: 7 · 2022: 6 · 2021: 17 · 2020: 19 · 2019: 14 · 2018: 10 · 2017: 18 · 2016: 13 · 2015: 5 · 2014: 1
FWCI
22.28
Type
journal article
Language
en
Open access
Licence
other-oa
Locations
  • Information Systems Research (publishedVersion)
  • London School of Economics and Political Science Theses Online (London School of Economics and Political Science) (acceptedVersion, other-oa)
  • London School of Economics and Political Science Research Online (London School of Economics and Political Science) (acceptedVersion)
  • Figshare (submittedVersion)
  • IRIS - Institutional Research Information System (Libera Università Internazionale degli Studi Sociali Guido Carli) (submittedVersion)
  • Open Research Exeter (University of Exeter) (submittedVersion)
Funders
Engineering and Physical Sciences Research Council
Topics
  • Health Sciences › Health Professions › General Health Professions › Mobile Health and mHealth Applications
  • Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
  • Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
Keywords
patient self-report, social media, patient involvement in research, medical categories, patient experience

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