Aptic, Developing a Social Network for E-patients: Lesson Learned



Manuel Armayones Ruiz* Manuel Armayones Ruiz*, Fundacio Universitat Oberta de Catalunya-Internet Interdisciplinary Institute, Barcelona, Spain
Beni Gómez Zúñiga, Fundacio Universitat Oberta de Catalunya-Internet Interdisciplinary Institute, Barcelona, Spain
Eulàlia Hernández Encuentra, Fundacio Universitat Oberta de Catalunya-Internet Interdisciplinary Institute, Barcelona, Spain
Noemí Guillamón Cano, Fundacio Universitat Oberta de Catalunya-Internet Interdisciplinary Institute, Barcelona, Spain
Begonya Nafría Escalera, Fundacio Universitat Oberta de Catalunya-Internet Interdisciplinary Institute, Barcelona, Spain
Gerardo Ontiveros Rodríguez, Fundacio Universitat Oberta de Catalunya-Internet Interdisciplinary Institute, Barcelona, Spain
Ana Bosque García, Hospital St.Joan de Déu, Barcelona, Spain
Modesta Pousada Fernández, Fundacio Universitat Oberta de Catalunya-Internet Interdisciplinary Institute, Barcelona, Spain
Modesta Pousada Fernández, Fundacio Universitat Oberta de Catalunya-Internet Interdisciplinary Institute, Spain


Track: Research
Presentation Topic: Building virtual communities and social networking applications for patients and consumers
Presentation Type: Oral presentation
Submission Type: Single Presentation

Building: LKSC Conference Center Stanford
Room: Lower Auditorium 120
Date: 2011-09-17 04:30 PM – 06:00 PM
Last modified: 2011-08-12
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Abstract


Introduction: The APTIC social network has been developed by the PSINET research group at the Universitat Oberta de Catalunya, in collaboration with Hospital de St. Joan de Déu and the Fesalud Foundation. The network aims at enabling the individual members of patients’ associations (mostly parents of children with chronic and rare diseases) to share experiences, information, resources and advice.
In parallel, we created a group on Facebook (APTIC Facebook Group) to publicize the network and analyse differences in the use of the two platforms (APTIC Social Network vs. APTIC Facebook Group)

Methods: User data were collected from Google Analytics in order to obtain frequencies for users, users’ features, visited pages, user generated contents, etc.
We used questionnaires and made focus groups with users of both groups to analyse their differential use, expectations and preferences of the platforms (APTIC Social Network vs APTIC Facebook Group).

Results:
One year after setting up the network we have 450 users in APTIC (most of them without posting contributions to the site) and 1500 in the APTIC Group in Facebook (with a higher level of participation).
In its first year of activity, the APTIC Social Network has become a reservoir of information about disabilities and rare diseases affecting children and teenagers and the APTIC Facebook Group a space for the “social life” of parents and friends.
Thus, the APTIC Social Network adds value to the community because the information available there (after having been proved useful) becomes knowledge available to all members. However, contrary to what we expected, the APTIC Social Network has not developed into a forum for dialogue or the exchange of personal experiences, but into a reservoir of information. Moreover, social networks such as Facebook have become the main means of promotion and dissemination of APTIC: 90% of APTIC users have learned about the APTIC Social Network through the APTIC Facebook Group.

Conclusions:
The parents and families are using our social network in a different way than we had originally planned (and we need to continue adapting to their needs and actual use)
Analyzing the data, we conclude that we should redesign our network strategy by integrating the APTIC Social Network with other social media tools and channels on Youtube ,Twitter, Dropbox, and Linkedin and maintain the current APTIC Social Network as a "hub" from which users can access other services. We also need to expand our network beyond the usual limits of a vertical network, create a pervasive and ubiquitous environment while at the same time offering users a “private space” which they can use the way they want.




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