global sci consumer network: resources for online communication frans penninx (dutch sci...
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GLOBAL SCI CONSUMER NETWORK:
Resources for online communication
Frans Penninx (Dutch SCI Association)
Sara Rubinelli (University of Lucerne and Swiss Paraplegic Research, Switzerland)
Istanbul, October 2013
Istanbul, 2013
Introduction to Global SCI Consumer Network website PARAFORUM, a project of the Swiss Paraplegic FoundationConclusions and Questions
INDEXINDEX
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Communication is key
No communication = no Global Network
Communication relies on meetings, emails & website
COMMUNICATIONCOMMUNICATION
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OUR WEBSITE: www.globalsci.net
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THE SECTION: MEETINGS (1/2)
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SCI specific / relevant Include contributions from consumers Focus on international audience Advance warning given Results can be reported afterwards
THE SECTION: MEETINGS (2/2)
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THE SECTION: FORUM
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INTERACTIONS WITHIN THE COMMUNITY IS ESSENTIAL
but ENABLING OPTIMAL SUPPORT FOR ONLINE INTERACTION IS
NOT TRIVIAL …
INTERACTIONS WITHIN THE COMMUNITY IS ESSENTIAL
but ENABLING OPTIMAL SUPPORT FOR ONLINE INTERACTION IS
NOT TRIVIAL …
Online interactive communication in the field of SCI :
NEW KID ON THE BLOCK
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An initiative of the Swiss Paraplegic Group led by Swiss Paraplegic Research
PARAFORUM: FROM WEB 1.0 TO WEB 2.0PARAFORUM: FROM WEB 1.0 TO WEB 2.0
A Web 2.0 site may allow users to interact and collaborate with each other in a social media dialogue as creators of user-generated content in a virtual community, in contrast to websites where people are mainly limited to the passive viewing of content.
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COLLABORATIVE COMMUNITY: working together on a specific task
FORUM: speaking about topics in a question-answer format
BLOG: users as authors of articles
SOCIAL NETWORK: speaking about topics of interest within an individual’s group of relationships
SELF-TRACKING TOOL: online diaries for noting and sharing what matter in relation to health and life-domains
PARAFORUM: PARAFORUM: INTERACTIVE MODELS OF COMMUNICATONINTERACTIVE MODELS OF COMMUNICATON
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AMONG 4 MAIN STAKEHOLDERS
SCI INDIVIDUALS (AND THEIR
ORGANIZATIONS)
SCIHEALTH
PROFESSIONALS
SCI FAMILIES AND
FRIENDS
RESEARCHERS
PARAFORUM
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By capturing, sharing and making use of diversified expertise:
Consumers = Experts in managing SCI
Health professionals = Experts in their work fields
Researchers = Experts in the science of SCI
PARAFORUM: BENEFITTING THE SCI COMMUNITYPARAFORUM: BENEFITTING THE SCI COMMUNITY
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FROM THE FROM THE FORUMFORUM IN ANCIENT ROME … IN ANCIENT ROME …
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TO THE COVER PAGE OF PARAFORUMTO THE COVER PAGE OF PARAFORUM
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TO THE HOME PAGE OF PARAFORUMTO THE HOME PAGE OF PARAFORUM
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USER PROFILE ON PARAFORUMUSER PROFILE ON PARAFORUM
THE LIBRARYTHE LIBRARY
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FORUM WITH DOCTOR ONLINE FORUM WITH DOCTOR ONLINE FOCUS ON HEALTH AND HEALTH-RELATED TOPICSFOCUS ON HEALTH AND HEALTH-RELATED TOPICS
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CONSUMERPERSPECTIVES
CONSUMERPERSPECTIVES
FAMILYPERSPECTIVES
FAMILYPERSPECTIVES
MY IDEAS (1/3)MY IDEAS (1/3)FOCUS ON TOOLS, DEVICES, DESIGN OF THE ENVIRONMENTFOCUS ON TOOLS, DEVICES, DESIGN OF THE ENVIRONMENT
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MY IDEAS (2/3)MY IDEAS (2/3)
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MY IDEAS (3/3)MY IDEAS (3/3)
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RESEARCH CORNERRESEARCH CORNER
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ARTICLE OF THE MONTHARTICLE OF THE MONTH COLLABORATE WITH RESEARCHERSCOLLABORATE WITH RESEARCHERS
LINKS TO RESEARCH LINKS TO RESEARCH
Intense personal engagement
Widespread dissemination
Information that is customized for and accessible
to diverse audiences
Access to information on demand
Linkages to others for social support
Information that relates realistically to life issue
OVERALL, PARAFORUM TO ENABLE:OVERALL, PARAFORUM TO ENABLE:
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Daily monitoring of content-managers for:
Weekly updates of PARAFORUM
Managing users registrations (mandatory to use
interactive services)
Managing users requests and information flux
Enhancing types of discussions authorized
Removing non-authorized behaviors from users
Assuring the ‘no advertising’ policy
PARAFORUM: PROFESSIONAL CONTENT-MANAGEMENTPARAFORUM: PROFESSIONAL CONTENT-MANAGEMENT
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Launch 2nd December in four languages (D, F, I, E)- Content published in 4 languages- Users can write/post in 4 languages- Content-management support in 4 languages
Data protection under the IT system of the Swiss Paraplegic Group
From 2014, projects to enable usages of PARAFORUM through smart and basic mobile phones
PARAFORUM: KEY-TECHNICAL ASPECTS PARAFORUM: KEY-TECHNICAL ASPECTS
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Global Network needs own website
Mainly for information (until now)
Need for other languages
Resources are very limited (until now)
Forum on website is not used
PARAFORUM looks promising
CONCLUSIONS CONCLUSIONS
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In general regarding this presentation
Can cooperation lead to synergy
Shall we investigate linking the GN website and
PARAFORUM, especially the sections:
My Ideas,
Forum and
Research Corner
QUESTIONS QUESTIONS
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MANY THANKS FOR YOUR ATTENTION