Abstract #206  -  A community-based Internet approach for PLWHA: www.seronet.info
Authors:   Presenting Author:   mr Stephane Simonpietri - Association AIDES
Additional Authors:  Ms. Daniela  Rojas, Mr. Jean-Marie Le Gall, Mr. Olivier Jablonski, Mr. Christian Andreo, Mr. Bruno Spire, Mr. Vincent Pelletier,
Method / Issue: New technologies play an important role in the flow of health information. In fact, Internet has become a major source to obtain information about health and illness, treatment, symptoms, etc. HIV/AIDS is a good example of this kind of dynamic. Besides, public health institutions and non-governmental organizations have turned to the Internet to ensure the visibility of their actions and to offer informative contents which they consider useful and/or necessary for their target groups. However, in the HIV/AIDS domain, they are still major goals to be achieved, like delivering understandable information about therapeutics, social rights, prevention to target groups and offering a space to decrease isolation, secret and rejection. Furthermore, the most of the websites addressed to PLWHA rarely give a place for contribution to HIV positive people.
Results / Comments: For all these reasons, AIDES, the largest French community-based HIV/AIDS NGO, created in 2008 a website, called Seronet, dedicated to HIV where the web surfers would become users and producers. Fortunately, this project coincides with the apparition of a new technology on the Internet called Web 2.0, which develops interactivity in the virtual community, supporting exchanges between all web users, but also giving access to the groups created in the network through, for example, friends’ lists. The main objective of Seronet is to improve the global health of PLWHA. Following the principles of the community-based action, we focused on the specific objectives of the website, mainly the way in which the site would be built, step-by-step, with the users (animation, contribution and empowerment of the participants). This way, we ensure that the process allows a mobilization of the PLWHA and creates a community dynamic specific to this virtual space. Since mid-January 2009, Seronet has 3,160 registered users who filled in their profile and who can write on the site (blogs, chats and forums). To date 1,73000 connections have been entered. From the data on 1,972 people, we can make a first summary profile of the “Seronet surfer”: 80% are men, 19% are women and 1% transsexuals. Concerning the sexual orientation (N=1700), 62% reported to be gay, 33% heterosexuals and 3,3% bisexuals. 90% say they are HIV positive, 8% HIV negative and 2% are not aware of their serology. The geographical distribution remains very French (88%) including 30% in Paris area, 2,5% reside in Canada (primarily Quebec), 2% in Switzerland and 1,2% in Belgium.
Discussion: Considering the feedback of the web surfers, it can be said that this site helps reducing loneliness, provides comprehensible information, and generates interesting debates for PLWHA. However, we can also observe in Seronet classic problems related to the group behavior. For example, difficulties for those who are shy expressing themselves, a fortiori when they face wordy and affirmative web surfers; or the difficulty of a cohabitation between men and women, homosexual and heterosexuals, former or current drug users, between younger and older people in the same space. That’s why the evaluative aspect still needs to take a major role. We need more empirical data showing the existence of benefits and difficulties linked to the fact of pertaining to a virtual network.
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