title: Lay Crowd-Sourced Expertise (LCE) and Its Influence on the New Role of Patients: Ethical and Societal Issues.
abstract: The emergence of social media on the Internet allows patients to discuss about their chronic diseases within online communities sharing common interests. This allows patients to gather other patients' experience, and gain new knowledge that is usually not shared by healthcare professionals. In this context, further studies are required on the actual impact of the use of social networks on the quality of life of patients participating in these online communities, focusing on the evolving role and impact of Lay Crowdsourced expertise (LCE) in improving disease management and control. We present a study on a large number of posts from social networks of different online communities. This study allowed us to choose four pathologies, with distinctive characteristics relevant for our future analysis, and to define the themes that will be covered in future work by online questionnaires. The analysis of responses from patients, who volunteer to participate, will help us in exploring how interactions between patients, on these online communities, may help them to gain useful information for managing their conditions and improving their quality of life. Furthermore, we will identify new ethical issues that arise in the sharing of health data.
authors: INSERM U1142, LIMICS, F-75006, Paris, France; Sorbonne Universités, UPMC Université Paris 06, Université Paris 13, Sorbonne Paris Cité, F-93430, Villetaneuse, France.
authors: Eugenia
authors: E
authors: Lamas
authors: Facultad de Medecine, Universidad de Chile, Santiago, Chile.
authors: Rodrigo
authors: R
authors: Salinas
authors: Facultad de Ciencias Sociales, Universidad de Chile, Santiago, Chile.
authors: Marcela
authors: M
authors: Ferrer
authors: INSERM U1142, LIMICS, F-75006, Paris, France; Sorbonne Universités, UPMC Université Paris 06, Université Paris 13, Sorbonne Paris Cité, F-93430, Villetaneuse, France.
authors: Cedric
authors: C
authors: Bousquet
authors: CERMES 3 : INSERM U.988/UMR CNRS 8211/EHESS/Université Paris Descartes, F-94801, Villejuif, France.
authors: Dominique
authors: D
authors: Vuillaume
mesh_terms: D016494:Computer Security; D063045:Crowdsourcing / Q000941:ethics*; D006801:Humans; D010358:Patient Participation; D011788:Quality of Life; D061108:Social Media; D011795:Surveys and Questionnaires; D014342:Truth Disclosure