Governing PatientsLikeMe: Information Production and Research Through an Open, Distributed, and Data-Based Social Media Network

@article{Tempini2015GoverningPI,
  title={Governing PatientsLikeMe: Information Production and Research Through an Open, Distributed, and Data-Based Social Media Network},
  author={Niccol{\'o} Tempini},
  journal={The Information Society},
  year={2015},
  volume={31},
  pages={193 - 211}
}
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… 

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References

SHOWING 1-10 OF 72 REFERENCES

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

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, which could be seen as a harbinger of new models of organizing medical knowledge creation and medical work in the digital age.

PatientsLikeMe: Consumer Health Vocabulary as a Folksonomy

Analysis of the failed matches of PatientsLikeMe symptom terms reveals challenges for online patient communication, not only with healthcare professionals, but with other patients.

CRITICAL QUESTIONS FOR BIG DATA

The era of Big Data has begun. Computer scientists, physicists, economists, mathematicians, political scientists, bio-informaticists, sociologists, and other scholars are clamoring for access to the

Knowledge Collaboration in Online Communities

It is argued that the fluctuations in tensions can provide an opportunity for knowledge collaboration when the community responds to these tensions in ways that encourage interactions to be generative rather than constrained.

The Contradictory Influence of Social Media Affordances on Online Communal Knowledge Sharing

This work theorizes four affordances of social media representing different ways to engage in this publicly visible knowledge conversations: metavoicing, triggered attending, network-informed associating, and generative role-taking, and mechanisms that affect how people engage in the knowledge conversation.

Social Media Use in Organizations: Exploring the Affordances of Visibility, Editability, Persistence, and Association

The use of social media technologies—such as blogs, wikis, social networking sites, social tagging, and microblogging—is proliferating at an incredible pace. One area of increasing adoption is

The like economy: Social buttons and the data-intensive web

The paper examines Facebook’s ambition to extend into the entire web by focusing on social buttons and developing a medium-specific platform critique. It contextualises the rise of buttons and

Classificatory Theory in Data-intensive Science: The Case of Open Biomedical Ontologies

Knowledge-making practices in biology are being strongly affected by the availability of data on an unprecedented scale, the insistence on systemic approaches and growing reliance on bioinformatics

The Culture of Connectivity: A Critical History of Social Media

Table of Contents Acknowledgments Chapter 1: Engineering Sociality in a Culture of Connectivity 1.1 Introduction 1.2 From Networked Communication to Platformed Sociality 1.3 Making the Web Social:
...