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Cited by 66Information Systems Theories and ImplementationKnowledge Management and SharingMobile Crowdsensing and Crowdsourcing

Governing PatientsLikeMe: information production and research through an open, distributed, and data-based social media network

Open access
Tempini, Niccolò·2015·The Information Society
DOI 10.1080/01972243.2015.998108
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Abstract

Many 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.

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Crossref · 10.1080/01972243.2015.998108

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  • 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 Tempini, 2015

    The introduction identifies PatientsLikeMe as a for-profit company, and the Empirical findings say patients connect with others like them and find support and consolation. Those passages support the coexistence of commercial aims and patient connection, but do not establish that the platform generates feelings of belonging specifically, or that patients feel belonging despite its profit orientation. Page numbers are unavailable in our copy. (LLM, conf=0.82)

    Experimental — accuracy not yet measured

  • 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 Tempini, 2015

  • 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 Tempini, 2015

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Research works printed but not linked: 5

  1. Agre, P. E. 1992. Formalization as a Social Project. Quarterly Newsletter of the Laboratory of Comparative Human Cognition 14 (1): 25-27.
  2. Bateson, G. 1972. Steps to an Ecology of Mind. London: University of Chicago Press.
  3. Scheuermann, R. H., W. Ceusters, and B. Smith. 2009. Toward an Ontological Treatment of Disease and Diagnosis. In Summit on Translational Bioinformatics 2009, pp. 116-120. Available at: http://www.ncbi.nlm.nih.gov.proxyiub.uits.iu.edu/pmc/articles/PMC3041577/ (accessed November 23, 2014).
  4. Shirky, C. 2010. Cognitive Surplus, Culture. London: Penguin Press.
  5. Star, S. L. and M. Lampland. 2009. Reckoning With Standards. In Standards and Their Stories: How Quantifying, Classifying, and Formalizing Practices Shape Everyday Life, eds. M. Lampland and S. L. Star, pp. 3-24. Ithaca, NY: Cornell University Press.

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Authors
Tempini, N.
Affiliations
University of Exeter (GB)
Corresponding author
Tempini, Niccolò
ORCID
Tempini, Niccolò
Venue
The Information Society
Publisher
Informa UK Limited
Published
2015-03-15
Volume
31
Issue
2
Pages
193-211
ISSN
  • 0197-2243 (ISSN-L)
  • 1087-6537
DOI
10.1080/01972243.2015.998108
OpenAlex
W2081259270
Cited by
66
References
73
Citations by year
2025: 3 · 2024: 3 · 2023: 2 · 2022: 7 · 2021: 6 · 2020: 5 · 2019: 5 · 2018: 18 · 2017: 6 · 2016: 6 · 2015: 4 · 2014: 1
FWCI
37.62
Type
journal article
Language
en
Open access
Locations
  • The Information Society (publishedVersion)
  • London School of Economics and Political Science Research Online (London School of Economics and Political Science) (submittedVersion)
  • Figshare (submittedVersion)
  • Open Research Exeter (University of Exeter) (submittedVersion)
Topics
  • Social Sciences › Sociology and Political Science › Information Systems Theories and Implementation
  • Social Sciences › Communication › Knowledge Management and Sharing
  • Physical Sciences › Computer Science › Computer Science Applications › Mobile Crowdsensing and Crowdsourcing
Keywords
PatientsLikeMe, social media, self-reported health data, patient engagement, data structures, distributed data collection, knowledge-making, patient-generated health data

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