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

info@globalsci.net

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

Istanbul, 2013

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.

Istanbul, 2013

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

Istanbul, 2013

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:

Istanbul, 2013

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

Istanbul, 2013

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

Istanbul, 2013

MANY THANKS FOR YOUR ATTENTION