[Exchanges between patients on the Internet]. / Les échanges entre patients sur l'Internet.

Internet is an important place for debates between patients, whose active discussions allow the patient to appropriate medical information and to build up their expertise. Lists and forums are regulated and organised areas; discussions about common rules take up a large place in the discussion. On discussion lists, we observe that speech is unequally distributed: 10% of the most talkative speakers send between 50 and 70% of all the messages; we also observe the temporal stability of the groups and the weak prevalence of anonymity which is made possible because the group is not open freely to the general public. Experimented speakers dominate discussions on lists as on forums. 4 speakers' profiles can be distinguished: the adviser, the agitator, the hyperactive person, and the charismatic leader. The tone of a list is defined, among others, by the distribution of those profiles. A systematic study of the contents of discussion lists reveals six main topics within the debates on health: collective, personal and interpersonal, medicine, patient / user, information, and phatic. We can distinguish various kinds of lists: lists focused on the articulation between patients experiences and medical expertise, lists mainly concerned by the exchange of personal experiences, lists organized around the sharing of medical information, and finally lists dedicated to mutual support. In collaboratively contributing to the production of health information, patients involved in these discussions can open the way to enrichment of medical knowledge.

[Guidelines for internet mailing lists and electronic forums for patient groups]. / Une charte des listes de discussion entre patients: proposition pour une autorégulation.

Internet mailing lists (and other electronic forums) for discussions between patients are places where patient and their family and friends can talk, by e-mail, about their problems, exchange their experiences, and find support. The charter presented here proposes guidelines more specifically appropriate to this particular community--patients having conversations--than are either the general rules of Netiquette or the general guidelines for these lists. Three themes play a primary role in the guidelines set by this charter: the role of the list owners and moderators, the definition of the contents of exchanges, and relationships with doctors and more generally healthcare professionals. This charter is a regulatory instrument for lists that can serve a three-fold purpose: as a governance tool for list owners, as a tool for reflection for the constitution and definition of lists, and as training tools for list moderators.