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

Author information

1
INSERM, U 1142, LIMICS, F-75006, Paris, France; Sorbonne Universités, UPMC Université Paris 06, Université Paris 13, Sorbonne Paris Cité, F-93430, Villetaneuse, France.
2
Facultad de Medicina, Universidad de Chile, Santiago, Chile.
3
Institut de Biologie Valrose, CNRS UMR7277, Inserm, Faculté des sciences, Nice, France.
4
Facultad de Ciencias Sociales, Universidad de Chile, Santiago, Chile.
5
Facultad de Medicina, Universidad de Santiago, Santiago, Chile.

Abstract

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".

KEYWORDS:

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

PMID:
29039374
[Indexed for MEDLINE]

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