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.
Background
Internet (IT) has become the second largest source of patient information, right after the physician and well before magazines. The information collected has a significant role in the patients relationship with their doctor.
Objectives
To determine why and how patients use IT for their health.To know the perception of IT by rheumatologists and what they tell their patients
Methods
Patients: a questionnaire was distributed to 25 consultants in three French Rheumatology Centers on May 16, 2011.It was also available on 2 sites dedicated to French patients suffering from rheumatical diseases (spondylarthrite-blog.com; polyarthrite-rhumatoide.fr). Demographic data were collected. The first question was: “Do you consult IT for your health?” Then, the questions explored the reasons why patients consulted IT and the type of information sought. Doctors: A questionnaire was sent via the website of the French Society of Rheumatology to its members and distributed to the participants of the Rheumatology National Congress in December 2011. It asked perception of IT by rheumatologists and the advice to patients concerning IT consultation. All the data were processed by Epi Data 3.1 and Epi info 3.5.3.
Results
Patients: 112 questionnaires were analyzed. 75% of respondants stated that they consult IT. 75,3% inform their doctor. 39.5% say they check the answers given by their doctor; 49.3% seek a second opinion; 50.6% consult IT because of the lack of time of their physician. 90.9% want information about their disease, 75% need information about its evolution, 82.1% need information about their treatment. 3/112 patients reported buying drugs online. 36.3% participate in the forums and 33% use Facebook. Doctors:319 questionnaires were analyzed. There was no difference in responses by gender or practicing mode of the practitioner. 84.5% believe that patients use IT; 69.2% believe that their patients inform them of IT use; 42.9% ask patients about IT use. Physicians consider forums a waste of time, unnecessary, and dangerous for respectively 60.4%, 65.3% and 70%. 54.1% recommend sites because of lack of time (45%), or to complement information (91,5%),and as an educational support (84.7%). 23,8% of rheumatologists ask patients the question: “Do you use IT?” when aged between20 to 29 years and 45.1% when aged between 50 to 59 years.
Conclusions
Patients primarily use IT to seek additional information, without questioning the practitioner. Forums and Facebook are used by over one-third of patients, who underline the importance of sharing experiences via blogs. Doctors have integrated IT into their practice, but still too often consider it as a dangerous source of information, whereas all studies show self-regulatory data of the information published on IT (1). It seems that IT is a source of coping rather than sharing false or dangerous information. These results reflect a common trend with the UnitedKingdom (2), Austria (3) and Germany (4).
References
Potts HW, Wyatt JC. J Med Internet Res, 2002 Jan-Mar;4(1):e5. Surv...
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