1 APTIC. A social network to meet the needs of families and professionals around chronic conditions in childhood. PSiNET is supported by the University, Research and ITSociety Department of the Catalan Government. 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.
Medicine20 stanford armayones
Dec 10, 2014
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)
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)
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1
APTIC. A social network to meet the needs of families and professionals around chronic
conditions in childhood.
PSiNET is supported by the University, Research and ITSociety Department of the Catalan Government.
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.
2
80% of families and associations do want a web for health.
95% of the associations have a Web; 24% a Web 2.0; 5% tailored resources.
10% of youth in Catalonia have a cronic disease or disability.
ICT have supported 90% of families in their health care.
85% of families want better tailored online information, beyond Google.
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Sant Joan de Déu pediatric Hospital has an Area for patients’ Associations and their families.
50% of not Internet users will be ready to do it.
64% of recorded paediatric associations have an active role in the Area for patients.
Parents of children with chronic diseases are twice as likely to suffer health problems.
50% of parents of children with chronic diseases look at the Internet before or after visiting their GP; and 34% talk about it with him/her.
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APTIC: A COMMUNITY WITHIN A SOCIAL NETWORK
A community of practice for chronic disease management.
Pretending voluntary changes in improving common engagement and empowerment in health care.
Taking profit of previous structures.
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Patients leading professionals beyond the walls
PATIENTS
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WE DID; THEY DO
We
Needs analysis
Design and running platform
They What they want
…and in surprising ways
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WE DID
Needs analysis
Design and running the platform
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Tailored and accredited information.
Personal and social support.
Coordination and Engagement of different health actors.
3 basic needs that could be met by a Web
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Web design and running by using 3 strategies
Col.laborative initiative.
Social network structure.
Coordination, facilitation.
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A Collaborative initiative from the very beggining
University- Applied research
UOC
Research group PSiNET
Health system
Sant Joan de Déu pediatric Hospital
Associations’ Area
Financtial support for coordination
TicSalut Foundation
Technological Support
Fe Salud FoundationGeneral Execution
Support
Centre for Global ehealth Innovation
Open Software. Developers community
Information and dissemination
Patients Associations
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A Community of practice within a social network structure
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Just selecting and dragging to the
dashboard.
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14
15
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Menu with community
options
Latest posts in the
community
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Coordination is the key for running the network
Welcome and on-going support
Connection among users
Chat
Quick answering
Feedback
Information updatings
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WE DID and THEY DO
We
Needs analysis
Design and running platform
They do
What they want
…and on surprising ways
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That’s APTIC… and users do what they want…
The user is a Spanish mother, health professional, and linked to a patients
association.
73% 84%
50%75%
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… and ask for continous adjustments.
In general communities.
In professionals resources.
In access controlling and tracking.
In dissemination strategies.
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… and in surprising ways
The most important is NOT on the web.
After participating in APTIC,
…met offline?
…when taking a decision?
…better informed?
…better relationship with their health care team? / your patients?
…more confortable in health caring?
… positive change in their lives?
… feel better?
…
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Patients leading professionals beyond the walls
PATIENTS
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“... If APTIC includes resources for the
management of the disease, what if an assistencial team decides to create a community to interact with their patients? Up to now this is not an assistencial tool
but, could it be?; why not?; would APTIC support it?...” (from a Department of the hospital)
WE DID, THEY DO, WHAT IF?
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Improve positioning services.
Collect useful information of rare diseases.
Contact to your own health care team.
WHAT IF?
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