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: https://www.slideshare.net/IngmarWeber/social-media-research-and-practice-in-the-health-domain-tutorial-part-ii Learn more about social media for health here https://www.futurelearn.com/courses/social-media-in-healthcare

1. Social Media
Applications in the
Health Domain
(TUTORIAL)
Weill Cornell Medicine
Qatar
Building Capacity in
Healthcare
Professions, February
17, 2017
L. Fernandez-Luque
lluque@hbku.qa.edu
eHealth Researcher
Co-chair IMIA Social Media
Working Group
Qatar Computing Research
Institute, Qatar

2. Back to the origins

3. ©1995-2016 ACOR, Inc. All
worldwide rights reserved.
https://commons.wikimedia.org/w
iki/File:Clinton_Yeltsin_1995.jpghttps://www.washingtonpost.com/news/wonk/wp/2013/03/2
9/what-the-internet-looked-like-in-1995/
Is health social media new? (1995)

4. https://en.wikipedia.org/wiki/
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. Social Media - Tsunami.... (2010)

6. Internet Global (and mobile) (2011)

8. “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?

9. Early definition - Medicine 2.0 (2008)

10. 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 Twitter.com) with
high-resolution location information, broadcast between March 2011 and January 2012.
Social Media - Digital Epidemiology

11. • 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

12. SMS Polling
http://www.fews.net/west-africa/special-report/december-31-2014

13. Social Media Fake
News?

14. Wildfires of Misinformation
http://www3.weforum.org/docs/WEF_Gl
obalRisks_Report_2013.pdf

15. Believe or not in social media

16. Vax, Epilepsy - Murder!!!

17. 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.

18. Tsunamis of Misinformation

19. “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:
http://www.ctvnews.ca/health/who-
combating-rumours-that-coffee-onions-
can-cure-ebola-
1.1765996#ixzz3K6IdgBw5
Ebola – Whatapps

21. A new cure for Multiplie Sclerosis?

22. Liberation! Cure MS!!! (2009)

23. Liberation! Cure MS!!! (2009)

24. Lets Cure MS!!! Down with Pharma!

25. Web 2.0 setting up research agenda in
Canada?

26. Upps…! (2013)

27. 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

28. Revolution!
Participatory
Health
Source: Share your ink group
(www.tudiabetes.org)

29. 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
http://reginaholliday.blogspot.qa/

30. 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”

31. Why Patients First?
UK Department of Health (2005) Self care - a
real choice; self care support - a practical
option.
http://www.dh.gov.uk/assetRoot/04/10/08/92/04
100892.pdf

32. 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]
https://www.youtube.com/watch?v=lc9hA4gmlhw
https://www.youtube.com/watch?v=Fb8_k-VIg4k
Patient Empowerment

33. Health is more than disease
http://activemsers.org/tipstricks/choosingacoolingvest.html

34. “(after the paper was
published) the number one
email we got was from parents
of children suffering from
Williams-Beuren (syndrome)”
http://ngm.nationalgeographic.com/2011/03/taming-wild-animals/ratliff-text/2
Social Media - (patient) Research

35. 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.

36. 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

37. Genetic Social Networks

38. Genetic Social Networks = $$$$

39. Lets Play!!!
(together)

40. 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?

41. Fun and social: Big Blue Test
https://myglu.org/articles/big
-blue-test-results

42. Fun and social: ZOMBIES
https://zombiesrungame.com/

43. Fun and social (Sjekkdeg.no)

44. Fun and social: Sjekkdeg.no
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

45. Play to Nature
https://fold.it/portal/

46. 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

47. Fun and healthy

48. Medical Education &
Participatory
Healthcare

49. 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

50. 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)

51. YouTube - annotations and 3D videos

52. YouTube - annotations

53. MOOC & Education

54. 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.
https://www.futurelearn.com/courses
/social-media-in-healthcare

55. 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

56. Quality of Health Videos

57. Evidence and previous experiences

58. 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

59. Thanks
Luis Fernandez-Luque
Qatar Computing Research
Institute
lluque@hbku.edu.qa
@luisluque
https://www.slideshare.net/luis.luque
Join us!!!
Social Media WG (International Medical
Informatics Association)
Society for Participatory Medicine