The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination. This presentation was made for the Norwegian Knowledge Centre for the Health Service. Global Health Unit Open Seminar – 6th August 2013 In this presentation, we will introduce how social media is being used in transforming communication with patients. We will use study cases, such as the ‘zombi invasion’ organised by the CDC and online puzzles for biomedical research, to provide an overview of current trends. In addition, we will present research conducted at Norut (Northern Research Institute) about the challenges of finding trustworthy health social media. Our focus will be directed towards harmful online communities promoting anorexia as a lifestyle or anti-vaccination online groups.

1. The Good, The Bad and the Ugly
Luis Fernandez Luque - PhD Candidate
(luis.luque@norut.no)
Per Egil Kummervold - PhD
eHealth Group, Norut Tromsø (Norway)
A portrait of health social media trends and anti-vaccination.
Norwegian Knowledge Centre for the Health Service. Global Health
Unit Open Seminar – 6th August 2013

2. HEALTH SOCIAL MEDIA TODAY
Overview of the current context
6th August, 2013

3. 6th August, 2013
The Internet Boom

4. Social Media in the World

5. Dr. Google
Kummervold PE, Chronaki CE, Lausen B, et al. eHealth Trends in Europe 2005-2007: A Population-
Based Survey J Med Internet Res 2008;10(4):e42
McDaid D, Park A. Online Health: Untangling the Web.; 2011:30. Available at:
http://www.bupa.com/media/44806/online_20health_20-_20untangling_20the_20web.pdf. Accessed
March 8, 2013.

6. Dr. Google
McDaid D, Park A. Online Health: Untangling the Web.; 2011:30. Available at:
http://www.bupa.com/media/44806/online_20health_20-_20untangling_20the_20web.pdf. Accessed
March 8, 2013.

7. Health Social Media: The Perfect Storm
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8. THE GOOD
The power of social media in the health domain
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9. Playing Together
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10. Viral Information
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11. Viral Information
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12. Digital Disease Detection
Chunara R, Andrews JR, Brownstein JS. Social and news media enable estimation of epidemiological patterns early in
the 2010 Haitian cholera outbreak. Am J Trop Med Hyg. 2012 Jan;86(1):39-45. doi: 10.4269/ajtmh.2012.11-0597.

13. Digital Disease Detection
Brownstein JS, Freifeld CC, Madoff LC. Digital disease detection--harnessing the Web for public health surveillance. N
Engl J Med. 2009 May 21;360(21):2153-5, 2157. doi: 10.1056/NEJMp0900702. Epub 2009 May 7..

14. The World of Apps
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Weitzman ER, Adida B, Kelemen S, Mandl KD. Sharing data for public
health research by members of an international online diabetes social
network. PLoS One. 2011 Apr 27;6(4):e19256. doi:
10.1371/journal.pone.0019256.

15. THE BAD
Not everything is good
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16. Pro-Anorexia in YouTube
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. Pro-Anorexia in YouTube
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. Pro- vs Anti- Anorexia in Flickr
Yom-Tov E, Fernandez-Luque L, Weber I, Crain SP Pro-Anorexia and Pro-Recovery Photo
Sharing: A Tale of Two Warring Tribes J Med Internet Res 2012;14(6):e151

19. Pro- vs Anti- Anorexia in Flickr
Yom-Tov E, Fernandez-Luque L, Weber I, Crain SP Pro-Anorexia and Pro-Recovery Photo
Sharing: A Tale of Two Warring Tribes J Med Internet Res 2012;14(6):e151
Figure 4. Network graphs according to four connection
types (from top left, clockwise): Contacts, Favorites,
Tags, Comments.

20. THE UGLY
Anti-Vaccination Online Movement
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21. Anti-vaccination movement
James Gillray, The Cow-Pock—or—the Wonderful Effects of the New Inoculation! (1802)

22. Global Concern
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―With ever increasing access to Internet-based
information, an unsubstantiated rumour about
vaccines can rapidly circle the globe and
undermine immunization services, sparking
outbreaks of disease and untold deaths.‖
State of the World’s Vaccines and Immunization
WHO, Unicef and the World Bank (2010)

23. Anti-vaccination movement 2.0

24. Anti-vaccination movement 2.0

25. Who is winning the battle?
Briones, Rowena, et al. "When vaccines go viral: An analysis of HPV vaccine coverage on
YouTube." Health Communication 27.5 (2012): 478-485.

26. Anti-vaccination movement 2.0
Studies show:
– With questions regards about vaccination the most trusted source
are physicians. However, 70% will check Internet and only 30%
physicians. (USA)
– In many cases misleading information in social media has been
found to be more popular (e.g. HPV in YouTube, Forums about
measles vaccination).
– In some cases anti-vaccination webs are ranked higher than
leading information
Special Issue: The Role of Internet Use in
Vaccination Decisions. Edited by Cornelia
Betsch and Katharina Sachse. Vaccine,
Volume 30, Issue 25, Pages 3723-3818 (28
May 2012)
European Centre for Disease Prevention and
Control. ―Communication on immunisation –
building trust‖. Stockholm: ECDC; 2012.
http://ecdc.europa.eu/en/publications/publicati
ons/ter-immunisation-and-trust.pdf

27. Anti-vaccination movement 2.0
Sentiments
Salathé M, Khandelwal S. Assessing vaccination sentiments with online social media: implications for
infectious disease dynamics and control. PLoS Comput Biol. 2011. Oct;7(10)
Figure 1. (A) Total number of negative (red), positive (green), and neutral (blue) tweets relating
to influenza A(H1N1) vaccination during the Fall wave of the 2009 pandemic
“We validated our approach by identifying a strong correlation between
sentiments expressed online and CDC-estimated vaccination rates by region”

28. Map of Anti-vaccination 2.0
―Although 11 (28%) of the 39 reports about HPV in India obtained during the study
period (May 1, 2011, to April 30, 2012) were positive or neutral about HPV
vaccines, most, 28 (72%), were negative‖
Larson HJ, Smith DM, et al. Measuring vaccine confidence: analysis of data obtained by a media
surveillance system used to analyse public concerns about vaccines. Lancet Infect Dis. 2013
Jul;13(7):606-13

29. Discussion
• Internet is exploding and being used for health purposes.
• Lack of knowledge on health social media in developing
countries.
• Anti-vaccination is being catalyzed by social media, but it
is not fully understood.
– Quantification of the impact of online anti-vaccination propaganda.
– Why anti-vaccination is successful in social media (vs. health
authorities).
– Tools for automatic surveillance of vaccination propaganda in
social media.
– ―Evidence‖-based guidelines for vaccination communication in
social media
6th August, 2013

30. Luis Fernandez Luque (luis.luque@norut.no)
6th August, 2013