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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.

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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  • 1. APTIC. Developing a Social Network for ePatients: lessonslearned.
    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)
  • 2. A collaborative initiative from the very beginning
    Health system
    Sant Joan de Déu pediatric Hospital
    Patients Associations’ Area
    Information and dissemination
    Patients Associations
    University- Applied research
    Research group PSiNET
    General Execution Support
    Centre for Global ehealth Innovation
    Technological Support
    Carlos Bocanegra
    Financial support for coordination
    TicSalut Foundation
    Open Software. Developers community
  • 3. Patients' associations want APTIC to…
    • Be asource of knowledge for the Hospital.
    • 4. Enable the collaboration among the health care team.
    • 5. Be full of resources and help to evaluate health information.
    • 6. Be Easy, easy and…. easy to use and to maintain!
    • 7. Be a source of “technical information,” but also a place to share “vital experiences”.
    • 8. Be customizable of the platform.
    • 9. Maintain control about privacy.
  • They don’t want...
    • A Facebook2.
    • 10. To be only an “experiment” for the Hospital or the University.
    • 11. Too much information; as we can’t process all.
    • 12. Only ideas; as we need actions.
    • 13. A “standard” platform.
    • 14. To be Another Website.
    • 15. To loose the identity of our association.
  • And this is our response
    • Open source platform
    • 16. Without publicity
    • 17. Privacy
    • 18. Personalized profile
    • 19. Facilitator
    • 20. Collaboration with the Hospital
  • APTIC was developed following
    FLHN methodology
    Professional facilitation. Needs analysis. Usability analysis. Formative evaluation.
    with “Patients Association's Area” of an Hospital.
    Health Network
    Working collaboratively with patient's associations and with the managers of other Health Networks.
  • 21. Lessons learned... and some ideas we hope will be useful
    We are workingwithusers (families and professionals) notfortheusers.
    Thefacilitator (community manager) iskey inthesuccess of ourplatform.
    Thecommunity manager can’tbepaternalistic, like in the “oldmodel”, butcollaborative, motivator.... shouldmakethingshappen.
  • 22. Lessons learned...
    and some ideas we hope will be useful
    The needs analysis presents a wonderful opportunity to work and learn from the ePatients.
    Work with the “Patients Association's Area” of the Hospital increases the trust of users.
  • 23. 9
    A Community of practicewithin a social networkstructure
  • 24. 10
  • 25. 11
  • 26. 12
    Menu with community options
    Latest posts in the community
  • 27. Somethoughts
    20 users represent the 80% of the activity in APTIC (Law 1-9-90). Is there something we can do about it?
    70% of most active users have an average or a high academic level. What about the rest? Is there an “eHealth literacy divide”?
    The level of “self-disclosure” is not as high as we expected. (APTIC is more a “community of practice” than a site for social relationships).
  • 28. Somethoughts
    Users are mostly professionals.
    We are finding ways of collaboration in a “peer to peer” platform.
    APTIC group in Facebook:1500 people.
    It will disappear… be careful.
  • 29. Just selecting and dragging to the dashboard.
  • 30. 16
  • 31. Platformactivitystatistics
    Users (sept 2011): 384
    Mail messagesbetweenusers: 20733
    Bookmarks: 420
    Fileuploads: 291
    Vídeos: 170
    Blogs entries: 135
    Events in Calendar: 123
    ForumsTopics : 71
    Quotes of theday: 65
    Messages in friend'swall: 734
  • 32. Somedifficulties
    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)
  • 33. Results from in-depthinterviews
    I use APTIC…
    • To ask other parents
    • 34. To send information and resources
    • 35. For personal use (mail, personal interests)
    • 36. To find support and help
    • 37. To meet other families with the same condition
    • 38. To know more about the disease
  • Results from in-depth interviewsAdvantages over other networks (including FB)
    • Privacy
    • 39. Share with others like you.
    • 40. Easy access to content and resources
    • 41. Specific and well organized contents of health information
    • 42. “Serious contents”
    • 43. Non profit initiative
  • AboutAPTIC and Facebook
    From 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!”
  • 44. Someconclusions
    We are workingwith a littlenumber of families. Formost of them, APTIC is a usefultool and they are findinghelp, support, solidarity and goodresources. “Local” projects can bepart of thesolutionfor“global” problems.
    Wemustavoidworking from a “social networkcentered” perspective. Themostimportantisthepatient, notourplatform (itseemsobvious...).
    Weshouldn'tbelievethatourtoolisthe “best”, “unique” or “final”. Theusershave a “ personal time” for social network and weneedtooffersomethingdifferenttoFacebook. WeneedtoknowwhatistheeROI (emotional ROI) of APTIC.
  • 45. Thanksforyourattention!