M. Armayones 1 , B. Gómez-Zúñiga 1 , E. Hernández 1 , N. Guillamón 1 ; B. Nafría 1 , G. Ontiveros 1 , A. Bosque 2 & M. Pousada 1 . 1 PSiNET Research Group. IN3. Open University of Catalonia (Spain) 2 Hospital Materno Infantil St. Joan de Déu (Barcelona, Spain) [email protected]u http://www.uoc.edu/ in3/psinet APTIC. Developing a Social Network for ePatients: lessons learned.
Presentación de Manuel Armayones del Grupo de Investigación Psinet de la Universitat Oberta de Catalunya en el Congreso Medicine 2.0 en la Universidad de Stanford.
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Transcript
M. Armayones1, B. Gómez-Zúñiga1, E. Hernández1, N. Guillamón1; B. Nafría1, G. Ontiveros1, A. Bosque2 & M. Pousada1.
1PSiNET Research Group. IN3. Open University of Catalonia (Spain)2 Hospital Materno Infantil St. Joan de Déu (Barcelona, Spain)
Serious difficulties in obtaining data for a pre-post design.
People don’t want to be subjects in an experiment.
Perhaps our instruments are too long?
Quantitative analysis can prevent us from understanding what is happening on the network. We decided to make a qualitative assessment (through in-depth interviews)
Results from in-depth interviews
I use APTIC…• To ask other parents• To send information and resources• For personal use (mail, personal interests)• To find support and help• To meet other families with the same
condition• To know more about the disease
• Privacy• Share with others like you. • Easy access to content and resources• Specific and well organized contents of health
information• “Serious contents”• Non profit initiative
Results from in-depth interviewsAdvantages over other networks (including
FB)
About APTIC and FacebookFrom transcriptions (n=6 in-depth interviews)
U1 “In APTIC I don't upload pictures of my holidays. In Facebook I don't write like I write in APTIC”.
U2 "APTIC has a team that manages and coordinates the network. It has a much more professional and serious structure”.
U3. “With APTIC I don't feel alone”.
U4. “APTIC is for personal purposes; FB for social purposes”.
U1. “For health issues, I prefer closed networks”.
U2. “I don't like FB, actually, but all the people are in FB”
U5. “APTIC is a social network: people to people!”
Some conclusions
We are working with a little number of families. For most of them, APTIC is a useful tool and they are finding help, support, solidarity and good resources. “Local” projects can be part of the solution for “global” problems.
We must avoid working from a “social network centered” perspective. The most important is the patient, not our platform (it seems obvious...).
We shouldn't believe that our tool is the “best”, “unique” or “final”. The users have a “ personal time” for social network and we need to offer something different to Facebook. We need to know what is the eROI (emotional ROI) of APTIC.