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.

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) marmayones@uoc.edu http://www.uoc.edu/in3/psinet

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 UOC 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

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.

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.

16. Without publicity

17. Privacy

18. Personalized profile

19. Facilitator

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 9

24. 10 10

25. 11 11

26. 12 Menu with community options Latest posts in the community 12

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 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)

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

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”

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! marmayones@uoc.edu