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Medicine20 stanford armayones

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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)

Published in: Health & Medicine
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Medicine20 stanford armayones

  1. 1. APTIC. A social network to meet the needs of families and professionals around chronic conditions in childhood. Hernández-Encuentra, E.; Armayones, M.; Gómez-Zúñiga, B.; Guillamón, N.; Nafría, B.; Ontiveros, G. & Bosque, A. PSiNET research group. Universitat Oberta de Catalunya- IN3 Institute.PSiNET is supported by the University, Research and ITSociety Department of the Catalan Government. 1
  2. 2. 10% of youth in Catalonia have a cronic disease or disability. 95% of the associations have a Web; 24% a Web 2.0; 5% tailored resources. ICT have supported 90% of families in their health care.80% of families and associations do want a web for health. 85% of families want better tailored online information, beyond Google. 2
  3. 3. Sant Joan de Déu pediatric Hospital has an Areafor patients’ Associations and their families.64% of recorded paediatric associations have anactive role in the Area for patients.Parents of children with chronic diseases are twiceas likely to suffer health problems.50% of parents of children with chronic diseaseslook at the Internet before or after visiting theirGP; and 34% talk about it with him/her.50% of not Internet users will be ready to do it. 3
  4. 4. APTIC: A COMMUNITY WITHIN A SOCIAL NETWORKA community of practice for chronic disease management.Pretending voluntary changes in improving commonengagement and empowerment in health care.Taking profit of previous structures. 4
  5. 5. Patients leading professionals beyond the walls PATIENTS 5
  6. 6. WE DID; THEY DOWe Needs analysis Design and running platformThey What they want …and in surprising ways 6
  7. 7. WE DIDNeeds analysisDesign and running the platform 7
  8. 8. 3 basic needs that could be met by a Web Tailored and accredited information. Personal and social support. Coordination and Engagement of different health actors. 8
  9. 9. Web design and running by using 3 strategies Col.laborative initiative. Social network structure. Coordination, facilitation. 9
  10. 10. A Collaborative initiative from the very beggining Health systemSant Joan de Déu Information andpediatric Hospital disseminationAssociations’ Area Patients Associations University- Applied research Technological Support General Execution UOC Support Fe Salud Foundation Research group PSiNET Centre for Global ehealth Innovation Financtial support for Open Software. coordination Developers community TicSalut Foundation 10
  11. 11. A Community of practice within a social network structure 11
  12. 12. Just selecting and dragging to the dashboard. 12
  13. 13. 13
  14. 14. 14
  15. 15. 15
  16. 16. Menu withcommunity options Latest posts in the community 16
  17. 17. Coordination is the key for running the network Welcome and on-going support Connection among users Chat Quick answering Feedback Information updatings 17
  18. 18. WE DID and THEY DOWe Needs analysis Design and running platformThey do What they want …and on surprising ways 18
  19. 19. That’s APTIC… and users do what they want… 73% 84% The user is a Spanish mother, health professional, and linked to a patients50% association. 75% 19
  20. 20. … and ask for continous adjustments.In general communities.In professionals resources.In access controlling and tracking.In dissemination strategies. 20
  21. 21. After participating in APTIC, … and in surprising ways …met offline? …when taking a decision? …better informed?The most important is NOT on …better relationship with their health care team? / your patients? the …more confortable in health caring? web. … positive change in their lives? … feel better? … 21
  22. 22. Patients leading professionals beyond the walls PATIENTS 22
  23. 23. WE DID, THEY DO, WHAT IF?“... If APTIC includes resources for themanagement of the disease, what if anassistencial team decides to create acommunity to interact with their patients?Up to now this is not an assistencial toolbut, could it be?; why not?; wouldAPTIC support it?...” (from a Department of thehospital) 23
  24. 24. WHAT IF?Improve positioning services.Collect useful information of rare diseases.Contact to your own health care team. 24
  25. 25. APTICpsinet.in3@uoc.edu 25

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