Lamas Eugenia, Coquedano Carla, Bousquet Cedric, Ferrer Marcela, Chekroun Michael, Zorrilla Sergio, Salinas Rodrigo
Inserm, Sorbonne Université, université Paris 13, Laboratoire d'informatique médicale et d'ingénierie des connaissances en e-santé, LIMICS, F-75006 Paris, France.
Facultad de Ciencias Sociales, Universidad de Chile, Santiago, Chile.
Stud Health Technol Inform. 2018;251:237-240.
Virtual online communities help people in coping with complex health issues, such as those present in patients suffering chronic diseases. Further research is required in order to clarify the impact of sharing of personal experiences on the perception of privacy and confidentiality by patients. We studied the case of Carenity an online social network created in France in 2011 bringing together 300,000 patients across Europe, and selected patients suffering Multiple Sclerosis. We conducted an exploratory-descriptive survey, and 253 patients completed an online questionnaire. Most participants did not consider that their privacy was threatened when sharing their personal experiences and data associated with their health condition. As common sense prevents one to share information to strangers to ensure privacy, such paradox may be explained by new strategies to face challenges imposed by chronic conditions disease, where sharing personal experiences may be considered as a complementary source of social support by patients.
虚拟在线社区帮助人们应对复杂的健康问题，比如慢性病患者所面临的问题。为了阐明分享个人经历对患者隐私和保密观念的影响，还需要进一步研究。我们研究了Carenity的案例，这是一个2011年在法国创建的在线社交网络，汇聚了欧洲各地30万名患者，我们选取了患有多发性硬化症的患者。我们进行了一项探索性描述性调查，253名患者完成了一份在线问卷。大多数参与者在分享与健康状况相关的个人经历和数据时，并不认为自己的隐私受到了威胁。由于常识会阻止人们向陌生人分享信息以确保隐私，这种矛盾现象或许可以通过应对慢性病所带来挑战的新策略来解释，在这种情况下，分享个人经历可能被患者视为社会支持的一种补充来源。
