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)

Transcript of Medicine20 stanford armayones

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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.

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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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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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APTIC

psinet.in3@uoc.edu