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

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. Social Media and Rare Diseases

3. Social Media / Web 2.0

11. ePatients Empowered, Equipped, Enabled and Engaged

12. ePatients

13. Diario de Pedro

14. Motivations http://www.slideshare.net/luis.luque/e-patientslideshare-5978788

15. Online communities Sharing experience and support

17. Online communities

18. Sharing - PatientsLikeMe

19. Sharing - PatientsLikeMe

20. Sharing - PatientsLikeMe

21. Research - PatientsLikeMe

22. Research - PatientsLikeMe

23. Web Education and Portal Health Information

24. Eurordis – multilingual portal

25. Orphanet – multilingual portal

26. Web Education: it works!

27. Web Education: it works!

29. Online videos Websites are more than webs

31. YouTube

34. Health Promotion

35. Awareness – rare disseases

36. The “black/grey” social media Not so easy….

37. Unhealthy 2.0. - ProAna

38. Hard to find good resources

42. MyHealthVideos

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?

45. Questions ? Luis Fernandez Luque (luis.luque@norut.no)