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 Foundation  Conclusions and Questions INDEX INDEX Istanbul, 2013

 Communication is key  No communication = no Global Network  Communication relies on meetings, s & website  COMMUNICATION COMMUNICATION Istanbul, 2013

OUR WEBSITE: Istanbul, 2013

THE SECTION: MEETINGS (1/2) Istanbul, 2013

 SCI specific / relevant  Include contributions from consumers  Focus on international audience  Advance warning given  Results can be reported afterwards THE SECTION: MEETINGS (2/2) Istanbul, 2013

THE SECTION: FORUM Istanbul, 2013 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 2.0 PARAFORUM: 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: INTERACTIVE MODELS OF COMMUNICATON Istanbul, 2013

AMONG 4 MAIN STAKEHOLDERS SCI INDIVIDUALS (AND THEIR ORGANIZATIONS) SCI HEALTH 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 COMMUNITY Istanbul, 2013

FROM THE FORUM IN ANCIENT ROME … Istanbul, 2013

TO THE COVER PAGE OF PARAFORUM Istanbul, 2013

TO THE HOME PAGE OF PARAFORUM

Istanbul, 2013 USER PROFILE ON PARAFORUM

THE LIBRARY Istanbul, 2013

FORUM WITH DOCTOR ONLINE FOCUS ON HEALTH AND HEALTH-RELATED TOPICS Istanbul, 2013 CONSUMER PERSPECTIVES CONSUMER PERSPECTIVES FAMILY PERSPECTIVES FAMILY PERSPECTIVES

MY IDEAS (1/3) FOCUS ON TOOLS, DEVICES, DESIGN OF THE ENVIRONMENT Istanbul, 2013

MY IDEAS (2/3) Istanbul, 2013

MY IDEAS (3/3) Istanbul, 2013

RESEARCH CORNER Istanbul, 2013 ARTICLE OF THE MONTH COLLABORATE WITH RESEARCHERS 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: 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-MANAGEMENT Istanbul, 2013

 Launch 2 nd 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 Istanbul, 2013

 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 Istanbul, 2013

 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 Istanbul, 2013

MANY THANKS FOR YOUR ATTENTION