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The Meaning of Patient Empowerment in the Digital Age: The Role of Online Patient-Communities.

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INSERM, U 1142, LIMICS, F-75006, Paris, France; Sorbonne Universités, UPMC Université Paris 06, Université Paris 13, Sorbonne Paris Cité, F-93430, Villetaneuse, France.
Facultad de Medicina, Universidad de Chile, Santiago, Chile.
Institut de Biologie Valrose, CNRS UMR7277, Inserm, Faculté des sciences, Nice, France.
Facultad de Ciencias Sociales, Universidad de Chile, Santiago, Chile.
Facultad de Medicina, Universidad de Santiago, Santiago, Chile.


Traditionally, patient empowerment has been used as a strategy for health promotion. The rise of online communities of patients represents a good example of how patient empowerment occurs, independently of the intervention of existing healthcare providers and insurers, allowing thus a more accurate definition of meaning of this concept. We describe two situations related with the development of health-related social networks: (1) The emergence of a new biomedical research model in which patients lead research, shifting the equilibrium of power from the professionals to research subjects themselves, and (2) The emergence of Lay Crowd-Sourced Expertise in these communities, arising from the daily exchange among patients affected by chronic conditions and their relatives, giving place to a new era of bottom-up data generation, previously unknown in biomedical sciences. We enrich these descriptions by analyzing interviews to key actors of these "on line" communities": Michael Chekroun, founder of "Carenity, France", and Paul Wicks Vice President at "PatientsLikeMe, USA".


Community-Based Participatory Research; Ethics Research; Patient Empowerment; Social Networks

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