Literature DB >> 29039374

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

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


  3 in total

1.  A Prerequisite for Patient Centred Care is Empowering and Engaging Patients in the Digital Health: Report from EFMI Special Topic Conference (STC) 2017.

Authors:  Simon de Lusignan
Journal:  Acta Inform Med       Date:  2017-12

2.  Research data management in health and biomedical citizen science: practices and prospects.

Authors:  Ann Borda; Kathleen Gray; Yuqing Fu
Journal:  JAMIA Open       Date:  2019-12-09

3.  The Reliability and Validity of the Telephone-Based and Online Polish eHealth Literacy Scale Based on Two Nationally Representative Samples.

Authors:  Mariusz Duplaga; Karolina Sobecka; Sylwia Wójcik
Journal:  Int J Environ Res Public Health       Date:  2019-09-03       Impact factor: 3.390

  3 in total

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