the good, the bad and the ugly: a portrait of health social media trends and anti-vaccination

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The Good, The Bad and the Ugly Luis Fernandez Luque - PhD Candidate ([email protected]) 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

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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.

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Page 1: The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination

The Good, The Bad and the Ugly

Luis Fernandez Luque - PhD Candidate ([email protected])

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

Page 2: The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination

HEALTH SOCIAL MEDIA TODAYOverview of the current context

6th August, 2013

Page 3: The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination

6th August, 2013

The Internet Boom

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Social Media in the World

Page 5: The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination

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.

Page 6: The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination

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.

Page 7: The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination

Health Social Media: The Perfect Storm

6th August, 2013

Page 8: The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination

THE GOODThe power of social media in the health domain

6th August, 2013

Page 9: The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination

Playing Together

6th August, 2013

Page 10: The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination

Viral Information

6th August, 2013

Page 11: The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination

Viral Information

6th August, 2013

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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.

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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..

Page 14: The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination

The World of Apps

6th August, 2013

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.

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THE BADNot everything is good

6th August, 2013

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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.

Page 17: The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination

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.

Page 18: The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination

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

Page 19: The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination

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.

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THE UGLYAnti-Vaccination Online Movement

6th August, 2013

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Anti-vaccination movement

James Gillray, The Cow-Pock—or—the Wonderful Effects of the New Inoculation! (1802)

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Global Concern

6th August, 2013

“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 ImmunizationWHO, Unicef and the World Bank (2010)

Page 23: The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination

Anti-vaccination movement 2.0

Page 24: The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination

Anti-vaccination movement 2.0

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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.

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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/publications/ter-immunisation-and-trust.pdf

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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”

Page 28: The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination

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

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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

Page 30: The Good, the Bad and the Ugly: a portrait of health social media trends and anti-vaccination

Questions ?

Luis Fernandez Luque ([email protected])

6th August, 2013