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Social media research in the health domain (tutorial) - [part 1]


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Tutorial about the use of social media in the health domain. The tutorial is designed for healthcare professionals interested in eHealth. It was done for Weill Cornell Medicine - Qatar.

See the part II of the tutorial here:

Learn more about social media for health here

Published in: Health & Medicine
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Social media research in the health domain (tutorial) - [part 1]

  1. 1. Social Media Applications in the Health Domain (TUTORIAL) Weill Cornell Medicine Qatar Building Capacity in Healthcare Professions, February 17, 2017 L. Fernandez-Luque eHealth Researcher Co-chair IMIA Social Media Working Group Qatar Computing Research Institute, Qatar
  2. 2. Back to the origins
  3. 3. ©1995-2016 ACOR, Inc. All worldwide rights reserved. iki/File:Clinton_Yeltsin_1995.jpg 9/what-the-internet-looked-like-in-1995/ Is health social media new? (1995)
  4. 4. George_W._Bush#/media/Fil e:Defense.gov_News_Photo _010917-D-9880W-034.jpg “Thanks to the wonders of the Internet, anorexics and would-be anorexics around the globe can access more than 400 web sites designed solely for them.” “these web sites provide not only reinforcement, along with a forum for exchanging and picking up tips” Is health social media new? (2001)
  5. 5. Social Media - Tsunami.... (2010)
  6. 6. Internet Global (and mobile) (2011)
  7. 7. “Health 2.0/Medicine 2.0 is still a developing concept. Our study identified 46 unique definitions of Health 2.0 and Medicine 2.0 with seven recurrent topics” What is Social Media, Health X? X.0?
  8. 8. Early definition - Medicine 2.0 (2008)
  9. 9. Salathé M, Bengtsson L, Bodnar TJ, Brewer DD, Brownstein JS, Buckee C, Campbell EM, Cattuto C, Khandelwal S, Mabry PL, Vespignani A. Digital epidemiology. PLoS Comput Biol. 2012;8(7):e1002616. doi: 10.1371/journal.pcbi.1002616. Epub 2012 Jul 26. Figure 1. Map generated by more than 250 million public tweets (collected from with high-resolution location information, broadcast between March 2011 and January 2012. Social Media - Digital Epidemiology
  10. 10. • We analysed a debate in Facebook generated by ER doctors protesting about healthcare reform in Taiwan • 1800 members participated with 455 posts, 3745 comments and likes. • The Health Ministry engaged with emergency department after the Facebook discussion. Social Media - Collaboration/Policy
  11. 11. SMS Polling
  12. 12. Social Media Fake News?
  13. 13. Wildfires of Misinformation obalRisks_Report_2013.pdf
  14. 14. Believe or not in social media
  15. 15. Vax, Epilepsy - Murder!!!
  16. 16. Pro-anorexia Syed-Abdul S, Fernandez-Luque L, Jian WS, Li YC, et al. Misleading health-related information promoted through video-based social media: anorexia on YouTube. J Med Internet Res. 2013 Feb 13;15(2):e30.
  17. 17. Tsunamis of Misinformation
  18. 18. “There are reports, for example, of SMS messages circulating Guinea that a medical researcher in Senegal has found the cure for Ebola - hot chocolate, Nescafe, and raw onions taken once a day for three days.” Read more: combating-rumours-that-coffee-onions- can-cure-ebola- 1.1765996#ixzz3K6IdgBw5 Ebola – Whatapps
  19. 19. A new cure for Multiplie Sclerosis?
  20. 20. Liberation! Cure MS!!! (2009)
  21. 21. Liberation! Cure MS!!! (2009)
  22. 22. Lets Cure MS!!! Down with Pharma!
  23. 23. Web 2.0 setting up research agenda in Canada?
  24. 24. Upps…! (2013)
  25. 25. Key points • 1) Do learn how to engage with patients and media • 2) Do be careful with yellow press (and yellow medical researchers!) • 3) Do not oversell your research • 4) Do not create false hopes to patients • 5) Explain, empower, explain, empower
  26. 26. Revolution! Participatory Health Source: Share your ink group (
  27. 27. Regina Holliday The Society for Participatory Medicine defines participatory medicine as a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which medical care providers encourage and value them as full partners. Participatory Medicine
  28. 28. History of Participatory Health Tom Ferguson MD (died in 2006) Coined the term e-patient “e-patient: how they can help us to heal health care”
  29. 29. Why Patients First? UK Department of Health (2005) Self care - a real choice; self care support - a practical option. 100892.pdf
  30. 30. Gómez-Zúñiga B, Fernandez-Luque L, Pousada M, Hernández-Encuentra E, Armayones M. ePatients on YouTube: Analysis of Four Experiences From the Patients' Perspective. Med 2.0 2012;1(1):e1 ...And part of why I started my blog in the first place was because, even though I’ve lived with diabetes for such a long time and I didn’t known (sic) anyone else who had it, and I literally felt like the only diabetic on the planet. [KS] I met so many people from all over the world that I would never have been able to talk to, before the Internet of course, and then now, with the MS community on YouTube it’s incredible. [VB] Patient Empowerment
  31. 31. Health is more than disease
  32. 32. “(after the paper was published) the number one email we got was from parents of children suffering from Williams-Beuren (syndrome)” Social Media - (patient) Research
  33. 33. Image: The Economist Slide adapted from Fernando Martin (@fermarsan) The Quantified Self Quantified Self is a collaboration of users and tool makers who share an interest in self knowledge through self- tracking.
  34. 34. Frost J, Massagli M Social Uses of Personal Health Information Within PatientsLikeMe, an Online Patient Community: What Can Happen When Patients Have Access to One Another’s Data J Med Internet Res 2008;10(3):e15 DOI: 10.2196/jmir.1053 PatientsLikeMe – QS Patient Network
  35. 35. Genetic Social Networks
  36. 36. Genetic Social Networks = $$$$
  37. 37. Lets Play!!! (together)
  38. 38. Gomez-Galvez P, Suarez Mejias C, Fernandez-Luque L. Social media for empowering people with diabetes: Current status and future trends. Conf Proc IEEE Eng Med Biol Soc. 2015;2015:2135-8. doi: 10.1109/EMBC.2015.7318811. Is it web? Mobile? and App? A Game?
  39. 39. Fun and social: Big Blue Test -blue-test-results
  40. 40. Fun and social: ZOMBIES
  41. 41. Fun and social (
  42. 42. Fun and social: E Gabarron, Avatars using computer/smartphone mediated communication and social networking in prevention of sexually transmitted diseases among North-Norwegian youngsters BMC Medical Informatics and Decision Making 2012, 12:120
  43. 43. Play to Nature
  44. 44. Fun and social: Research 2.0 Good BM, Loguercio S, Griffith OL, Nanis M, Wu C, Su AI. The cure: design and evaluation of a crowdsourcing game for gene selection for breast cancer survival prediction. JMIR Serious Games. 2014 Jul 29;2(2):e7. doi: 10.2196/games.3350
  45. 45. Fun and healthy
  46. 46. Medical Education & Participatory Healthcare
  47. 47. Hansen M Versatile, Immersive, Creative and Dynamic Virtual 3-D Healthcare Learning Environments: A Review of the Literature J Med Internet Res 2008;10(3):e26 Social Media - Medical Education
  48. 48. Medical Education - YouTube • Quality of the content • Quality of the video (audio, video) • Textual information: tags, title, description • Learning outcomes • Content provider • Target audience • Captioning-subtitles (accessibility)
  49. 49. YouTube - annotations and 3D videos
  50. 50. YouTube - annotations
  51. 51. MOOC & Education
  52. 52. MOOC & Education Atique, Suleman, et al. "Lessons learnt from a MOOC about social media for digital health literacy." Engineering in Medicine and Biology Society (EMBC), 2016 IEEE 38th Annual International Conference of the. IEEE, 2016. /social-media-in-healthcare
  53. 53. Health Social Media Quality E Gabarron, L Fernandez-Luque, M Armayones, A YS Lau. Identifying measures used for assessing quality of YouTube videos with patient health information: A Review of Current Literature. Interact J Med Res 2013;2(1):e6
  54. 54. Quality of Health Videos
  55. 55. Evidence and previous experiences
  56. 56. Concluding Remarks • Training in identifying “trust” sources • Information recommendations need to be adapted to the individual (e.g. newly diagnosed, versus experienced patients) • Continuous changing technological landscape • Capacity building of individuals and professionals requires 1) identifying needs and skills, 2) foster empowerment to develop capacity
  57. 57. Thanks Luis Fernandez-Luque Qatar Computing Research Institute @luisluque Join us!!! Social Media WG (International Medical Informatics Association) Society for Participatory Medicine