| Literature DB >> 29039374 |
Eugenia Lamas1, Rodrigo Salinas2, Carla Coquedano1, Marie-Pierre Simon3, Cedric Bousquet1, Marcela Ferrer4, Sergio Zorrilla5.
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".Entities:
Keywords: Community-Based Participatory Research; Ethics Research; Patient Empowerment; Social Networks
Mesh:
Year: 2017 PMID: 29039374
Source DB: PubMed Journal: Stud Health Technol Inform ISSN: 0926-9630