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Social Media and Rare Diseases Luis Fernandez Luque, PhD Student Norut Tromsø (Norway) Manuel Armayones Ruiz, PhD Grupo de...
Social Media and Rare Diseases
Social Media / Web 2.0
Social Media / Web 2.0 <ul><li>Read and write </li></ul><ul><ul><li>You can create </li></ul></ul><ul><li>Mass access </li...
Social Media / Web 2.0 <ul><li>Read and write </li></ul><ul><ul><li>You can create </li></ul></ul><ul><li>Mass access </li...
Social Media / Web 2.0 <ul><li>Read and write </li></ul><ul><ul><li>You can create </li></ul></ul><ul><li>Mass access </li...
Social Media / Web 2.0 <ul><li>Read and write </li></ul><ul><ul><li>You can create </li></ul></ul><ul><li>Mass access </li...
Health Social Media <ul><li>Media: blogs, microblogs, videos, audio-podcast, forum. </li></ul><ul><li>Online communities: ...
Health Social Media <ul><li>Media: blogs, microblogs, videos, audio-podcast, forum.  </li></ul><ul><li>Online communities:...
Health Social Media <ul><li>Media: blogs, microblogs, videos, audio-podcast, forum. </li></ul><ul><ul><li>Sharing/Social <...
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 <ul><li>Privacy </li></ul><ul><li>How to use properly Web 2.0 tools </li></ul><ul><li>Information overload ...
Information Overload <ul><li>Teach health consumers </li></ul><ul><li>List of trusted Web 2.0 sources </li></ul><ul><li>Sp...
MyHealthVideos <ul><li>A recommender system of health videos  </li></ul><ul><ul><li>predefined list of trusted YouTube cha...
MyHealthVideos
Some Research Questions How can we encourage patients and researchers to work collaboratively against rare diseases? What ...
Rare Diseases & Social Media <ul><li>National projects </li></ul><ul><ul><li>Norwegian lottery,  Norwegian Research Counci...
Questions ? Luis Fernandez Luque (luis.luque@norut.no)
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Social Media&Rare Diseases

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

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  • Transcript of "Social Media&Rare Diseases"

    1. 1. 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 ‏
    2. 2. Social Media and Rare Diseases
    3. 3. Social Media / Web 2.0
    4. 4. Social Media / Web 2.0 <ul><li>Read and write </li></ul><ul><ul><li>You can create </li></ul></ul><ul><li>Mass access </li></ul><ul><li>Share it! </li></ul><ul><li>Social platform </li></ul><ul><li>Everywhere: mobil </li></ul><ul><li>Long tail </li></ul>
    5. 5. Social Media / Web 2.0 <ul><li>Read and write </li></ul><ul><ul><li>You can create </li></ul></ul><ul><li>Mass access </li></ul><ul><li>Share it! </li></ul><ul><li>Social platform </li></ul><ul><li>Everywhere: mobil </li></ul><ul><li>Long tail </li></ul>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
    6. 6. Social Media / Web 2.0 <ul><li>Read and write </li></ul><ul><ul><li>You can create </li></ul></ul><ul><li>Mass access </li></ul><ul><li>Share it! </li></ul><ul><li>Social platform </li></ul><ul><li>Everywhere: mobil </li></ul><ul><li>Long tail </li></ul>
    7. 7. Social Media / Web 2.0 <ul><li>Read and write </li></ul><ul><ul><li>You can create </li></ul></ul><ul><li>Mass access </li></ul><ul><li>Share it! </li></ul><ul><li>Social platform </li></ul><ul><li>Everywhere: mobil </li></ul><ul><li>Long tail </li></ul>
    8. 8. Health Social Media <ul><li>Media: blogs, microblogs, videos, audio-podcast, forum. </li></ul><ul><li>Online communities: PatientsLikeMe, forums </li></ul><ul><li>Virtual 3D worlds (second life) </li></ul><ul><li>Mobile/Tablet applications </li></ul>
    9. 9. Health Social Media <ul><li>Media: blogs, microblogs, videos, audio-podcast, forum. </li></ul><ul><li>Online communities: PatientsLikeMe, forums </li></ul><ul><li>Virtual 3D worlds (second life) </li></ul><ul><li>Mobile/Tablet applications </li></ul>
    10. 10. Health Social Media <ul><li>Media: blogs, microblogs, videos, audio-podcast, forum. </li></ul><ul><ul><li>Sharing/Social </li></ul></ul><ul><li>Online communities: PatientsLikeMe, forums </li></ul><ul><li>Virtual 3D worlds (second life) </li></ul><ul><li>Mobile/Tablet applications </li></ul>
    11. 11. ePatients Empowered, Equipped, Enabled and Engaged
    12. 12. ePatients
    13. 13. Diario de Pedro
    14. 14. Motivations http://www.slideshare.net/luis.luque/e-patientslideshare-5978788
    15. 15. Online communities Sharing experience and support
    16. 17. Online communities
    17. 18. Sharing - PatientsLikeMe
    18. 19. Sharing - PatientsLikeMe
    19. 20. Sharing - PatientsLikeMe
    20. 21. Research - PatientsLikeMe
    21. 22. Research - PatientsLikeMe
    22. 23. Web Education and Portal Health Information
    23. 24. Eurordis – multilingual portal
    24. 25. Orphanet – multilingual portal
    25. 26. Web Education: it works!
    26. 27. Web Education: it works!
    27. 29. Online videos Websites are more than webs
    28. 31. YouTube
    29. 34. Health Promotion
    30. 35. Awareness – rare disseases
    31. 36. The “black/grey” social media Not so easy….
    32. 37. Unhealthy 2.0. - ProAna
    33. 38. Hard to find good resources
    34. 39. Open questions <ul><li>Privacy </li></ul><ul><li>How to use properly Web 2.0 tools </li></ul><ul><li>Information overload </li></ul><ul><li>High speed innovation: new things every month </li></ul><ul><li>Effectiveness </li></ul>
    35. 40. Information Overload <ul><li>Teach health consumers </li></ul><ul><li>List of trusted Web 2.0 sources </li></ul><ul><li>Specialized retrieval tools for Web 2.0 health information </li></ul><ul><ul><li>Search engines </li></ul></ul><ul><ul><li>Recommender Systems </li></ul></ul>
    36. 41. MyHealthVideos <ul><li>A recommender system of health videos </li></ul><ul><ul><li>predefined list of trusted YouTube channels </li></ul></ul><ul><ul><li>Recommendations based on </li></ul></ul><ul><ul><ul><li>users’ health and demographics (e.g. user health, user profile) </li></ul></ul></ul><ul><ul><ul><li>the community (e.g. ratings) </li></ul></ul></ul><ul><li>Two versions: </li></ul><ul><li>Diabetes video portal </li></ul><ul><li>Rare Diseases video portal </li></ul>
    37. 42. MyHealthVideos
    38. 43. 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?
    39. 44. Rare Diseases & Social Media <ul><li>National projects </li></ul><ul><ul><li>Norwegian lottery, Norwegian Research Council </li></ul></ul><ul><li>International collaboration </li></ul><ul><ul><li>7 th Framework program </li></ul></ul><ul><ul><li>My PhD </li></ul></ul>
    40. 45. Questions ? Luis Fernandez Luque (luis.luque@norut.no)
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