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Presentation Luis Luque in IN3-UOC Seminar Research: Social Media and Rare Diseases: an opportunity for the long tail

Presentation Luis Luque in IN3-UOC Seminar Research: Social Media and Rare Diseases: an opportunity for the long tail

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Social Media&Rare Diseases Social Media&Rare Diseases Presentation Transcript

  • Social Media and Rare Diseases Luis Fernandez Luque, PhD Student Norut Tromsø (Norway) Manuel Armayones Ruiz, PhD Grupo de Investigación Psinet- Universitat Oberta de Catalunya (Spain) President of Asociación Española de Síndrome de Lowe ‏
  • Social Media and Rare Diseases
  • Social Media / Web 2.0
  • Social Media / Web 2.0
    • Read and write
      • You can create
    • Mass access
    • Share it!
    • Social platform
    • Everywhere: mobil
    • Long tail
  • Social Media / Web 2.0
    • Read and write
      • You can create
    • Mass access
    • Share it!
    • Social platform
    • Everywhere: mobil
    • Long tail
    WEB SEARCH HEALTH INFORMATION Kummervold PE, Chronaki CE, Lausen B, Prokosch H, Rasmussen J, Santana S, Staniszewski A, Wangberg SC eHealth Trends in Europe 2005-2007: A Population-Based Survey J Med Internet Res 2008;10(4):e42
  • Social Media / Web 2.0
    • Read and write
      • You can create
    • Mass access
    • Share it!
    • Social platform
    • Everywhere: mobil
    • Long tail
  • Social Media / Web 2.0
    • Read and write
      • You can create
    • Mass access
    • Share it!
    • Social platform
    • Everywhere: mobil
    • Long tail
  • Health Social Media
    • Media: blogs, microblogs, videos, audio-podcast, forum.
    • Online communities: PatientsLikeMe, forums
    • Virtual 3D worlds (second life)
    • Mobile/Tablet applications
  • Health Social Media
    • Media: blogs, microblogs, videos, audio-podcast, forum.
    • Online communities: PatientsLikeMe, forums
    • Virtual 3D worlds (second life)
    • Mobile/Tablet applications
  • Health Social Media
    • Media: blogs, microblogs, videos, audio-podcast, forum.
      • Sharing/Social
    • Online communities: PatientsLikeMe, forums
    • Virtual 3D worlds (second life)
    • Mobile/Tablet applications
  • ePatients Empowered, Equipped, Enabled and Engaged
  • ePatients
  • Diario de Pedro
  • Motivations http://www.slideshare.net/luis.luque/e-patientslideshare-5978788
  • Online communities Sharing experience and support
  •  
  • Online communities
  • Sharing - PatientsLikeMe
  • Sharing - PatientsLikeMe
  • Sharing - PatientsLikeMe
  • Research - PatientsLikeMe
  • Research - PatientsLikeMe
  • Web Education and Portal Health Information
  • Eurordis – multilingual portal
  • Orphanet – multilingual portal
  • Web Education: it works!
  • Web Education: it works!
  •  
  • Online videos Websites are more than webs
  •  
  • YouTube
  •  
  •  
  • Health Promotion
  • Awareness – rare disseases
  • The “black/grey” social media Not so easy….
  • Unhealthy 2.0. - ProAna
  • Hard to find good resources
  • Open questions
    • Privacy
    • How to use properly Web 2.0 tools
    • Information overload
    • High speed innovation: new things every month
    • Effectiveness
  • Information Overload
    • Teach health consumers
    • List of trusted Web 2.0 sources
    • Specialized retrieval tools for Web 2.0 health information
      • Search engines
      • Recommender Systems
  • MyHealthVideos
    • A recommender system of health videos
      • predefined list of trusted YouTube channels
      • Recommendations based on
        • users’ health and demographics (e.g. user health, user profile)
        • the community (e.g. ratings)
    • Two versions:
    • Diabetes video portal
    • Rare Diseases video portal
  • MyHealthVideos
  • Some Research Questions How can we encourage patients and researchers to work collaboratively against rare diseases? What motivational strategies could encourage collaborative work (collective intelligence) of these groups? Could be the video a useful tool? How collaborative activities between patients and researchers and their coordination can be supported by means of computer systems?
  • Rare Diseases & Social Media
    • National projects
      • Norwegian lottery, Norwegian Research Council
    • International collaboration
      • 7 th Framework program
      • My PhD
  • Questions ? Luis Fernandez Luque (luis.luque@norut.no)