Introduction
PatientsLikeMe is a for-profit organization based in Cambridge, Massachusetts, managing a social media-based health network that supports patients in activities of health data self-reporting and socialization. As of January 2015, the network counts more than 300,000 members and 2,300+ associated conditions and it is one of the most established networks in the health social media space. The web-based system is designed and managed to encourage and enable patients to share data about their health situation and experience.
Business Model
Differently from most prominent social media sites, the network is not ad-supported. Instead, the business model centers on the sale of anonymized data access and medical research services to commercial organizations (mostly pharmaceutical companies). The organization has been partnering with clients, in order to develop patient communities targeted on a specific disease, or kind of patient experience. In the context of a sponsored project, PatientsLikeMe...
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Further Reading
Angwin, J. (2014). Dragnet nation: A quest for privacy, security, and freedom in a world of relentless surveillance. New york: Henry Holt and Company.
Arnott-Smith, C., & Wicks, P. (2008). PatientsLikeMe: Consumer health vocabulary as a folksonomy. American Medical Informatics Association Annual Symposium Proceedings, 2008, 682–686.
Kallinikos, J., & Tempini, N. (2014). Patient data as medical facts: Social media practices as a foundation for medical knowledge creation. Information Systems Research, 25, 817–833. https://doi.org/10.1287/isre.2014.0544.
Lunshof, J. E., Church, G. M., & Prainsack, B. (2014). Raw personal data: Providing access. Science, 343, 373–374. https://doi.org/10.1126/science.1249382.
Prainsack, B. (2013). Let’s get real about virtual: Online health is here to stay. Genetical Research, 95, 111–113. https://doi.org/10.1017/S001667231300013X.
Richards, M., Anderson, R., Hinde, S., Kaye, J., Lucassen, A., Matthews, P., Parker, M., Shotter, M., Watts, G., Wallace, S., & Wise, J. (2015). The collection, linking and use of data in biomedical research and health care: Ethical issues. London: Nuffield Council on Bioethics.
Tempini, N. (2014). Governing social media: Organising information production and sociality through open, distributed and data-based systems (Doctoral dissertation). School of Economics and Political Science, London.
Tempini, N. (2015). Governing PatientsLikeMe: Information production and research through an open, distributed and data-based social media network. The Information Society, 31, 193–211.
Wicks, P., Vaughan, T. E., Massagli, M. P., & Heywood, J. (2011). Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nature Biotechnology, 29, 411–414. https://doi.org/10.1038/nbt.1837.
Wyatt, S., Harris, A., Adams, S., & Kelly, S. E. (2013). Illness online: Self-reported data and questions of trust in medical and social research. Theory Culture & Society., 30, 131–150. https://doi.org/10.1177/0263276413485900.
Zuboff, S. (2015). Big other: surveillance capitalism and the prospects of an information civilization. Journal of Information Technology, 30, 75–89.
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© 2022 Encyclopedia of Big Data
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Tempini, N. (2022). PatientsLikeMe. In: Schintler, L.A., McNeely, C.L. (eds) Encyclopedia of Big Data. Springer, Cham. https://doi.org/10.1007/978-3-319-32010-6_162
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DOI: https://doi.org/10.1007/978-3-319-32010-6_162
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