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

Stud Health Technol Inform. 2017;244:43-47.

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.

MeSH terms

  • Biomedical Research
  • France
  • Health Promotion*
  • Humans
  • Patient Participation*
  • Power, Psychological