This presentation was given at ISPAD 2017, in Innsbruck, and focuses on the subject of social media in diabetes.

1. "Youtuber" and Blogger:
the New Peer Group?
Fredrik Debong

2. SO WHY SHOULD I LISTEN?
• T1D since 1984
• Head of Research at mySugr GmbH
Fredrik Debong
@fdebong

3. ONE OF THOSE SLIDES…
• T1D since 1984
• Spoiler: he’s on YouTube!
• Employee of mySugr GmbH
(Subsidiary of Roche Diabetes Care)
• Received compensation by
• Novo Nordisk
• Sandoz
Conflict of Interest
O
M
G!

4. “… I do not believe that people will
want to spend so much time surfing
the web…”
Swedish minister of Communications, 1996

5. • What is a peer group?
• Network theory – the science of
social
• A glimpse of what’s out there
• Literature
• Conclusion and personal thoughts
AGENDA
Your next ~25 minutes


6. DEFINITION
• A socially connected group of
people, with something in common
• In diabetes the term is often used in
coaching and education
What is a peer group?


7. • Following 5,209 individuals since
1948!
• And o!spring!
• 12,067 individuals in 3 cohorts
• Size, BMI, LDL/HDL, BP,
questionnaires, …
• … and the 5 closest friends
EFFECT OF SOCIAL CONNECTIONS
Framingham Heart Study
[1]

8. EFFECT OF SOCIAL CONNECTIONS
Enter: Network Theory
[2] Christakis, Fowler. NEJM (2007)

9. EFFECT OF SOCIAL CONNECTIONS
Enter: Network Theory
[2] Christakis, Fowler. NEJM (2007)
• Node: An object in a network
• Tie: A connection between Nodes
• Cluster: A group of interconnected Nodes
• Ego: The Node we analyse
• Alter: A Node which may influence the Ego

10. [2] Christakis, Fowler. NEJM (2007)
EFFECT OF SOCIAL CONNECTIONS
Who A!ects the “Ego”?

11. [21] Christakis, Fowler. NEJM (2008)
EFFECT OF SOCIAL CONNECTIONS
Smoking is Contagious

12. 
EFFECT OF SOCIAL CONNECTIONS
Changing Clusters
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13. 
EFFECT OF SOCIAL CONNECTIONS
Changing Clusters
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14. EFFECT OF SOCIAL CONNECTIONS
Changing Clusters

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15. DEFINITION REVISITED
• A socially connected group of people,
with something in common
• In diabetes the term is often used in
coaching and education
• The cluster (peer group) a!ects the ego
• Behaviours are contagious
• So are outcomes!
What is a peer group?

[2] Christakis, Fowler. NEJM (2007) [3] Christakis. BMJ (2004)

16. BRINGING IT ONLINE
• The method of communication, is
not part of the definition
Enter, the web…

17. BRINGING IT ONLINE
Enter, the web…
• The method of communication, is
not part of the definition
• More and more of our
communication takes place online
• We do not have control. Yay.
[1] Lenhart, Pew Internet Research Center (2015)

18. WHAT’S OUT THERE?
YouTube
[5]

19. WHAT’S OUT THERE?
YouTube
Look! An idiot!
[5]

20. WHAT’S OUT THERE?
YouTube
Another one! Oh actually the same…
[5]

21. WHAT’S OUT THERE?
YouTube
[5]

22. SECTION NAME
YouTuber(s)
• youtube.com/user/DiabeticDanica
• A positive, happy and honest view
• Product reviews, howto’s, TONS
OF SMILES!
[23]

23. TWITTER
Birds?
• Twitter is one of the dominant public
social networks
• Tweets are short public messages and
images
• Can target/reference others,
@fdebong
• Can retweet (share) and favourite
Tweets

24. #DOC
WHAT’S OUT THERE?
• Bringing the Diabetes Online
Community #DOC together
• Local subgroups: #ozdoc, #dedoc, …
• ~Regular chats, fast paced yet well
moderated and self “correcting”
• Local & public!!!
The #doc
[6]

25. WHAT’S OUT THERE?
• More after political impact
• Regular chats: DSMA CHAT
• Diabetes Out Loud Podcast
• Managed by a voluntary foundation:
Diabetes Community Advocacy Foundation
#DSMAThe #dsma
[7]

26. WHAT’S OUT THERE?
Bloggers
• mein-diabetes-blog.com
• German speaking
• The most read in Germany
• Authors are T1D themselves
[8]

27. WHAT’S OUT THERE?
Bloggers
• https://thefitblog.com/
• Focused on fitness and
good eating
[9]

28. WHAT’S OUT THERE?
Bloggers
• scottsdiabetes.com
• Author is T1D
• One of the most
dependable in the US
• On board of DSMA, DHF
(RIP)
[10]

29. WHAT’S OUT THERE?
Bloggers
• diabetogenic.wordpress.com
• Author is T1D
• Employed by the Australian
Diabetes Association
[11]

30. WHAT’S OUT THERE?
Bloggers
• diagnosednotdefeated.com
• Phyllisa is T2D
• One of the rare bloggers living
with type 2 diabetes!
[22]

31. WHAT’S OUT THERE?
Instagrammers
• instagram.com/brickabetes/
• Tongue in cheek images on life
with diabetes
[12]

32. WHAT’S OUT THERE?
Instagrammers
• instagram.com/sugarsanity/
• Private Practice Dietitian, T1D
living in Malaysia
[13]

33. SHOW ME THE DATA
What do we actually know?
• Publications are scarce
• Reporting on clinical outcomes
non existent
• The focus lies on content analysis and
participant analysis
• A few rare studies on empowerment


34. SHOW ME THE DATA
Birds?
• Twitter is one of the dominant
public social networks
• Public as in everything is
out in the open

35. Birds!
[14] Liu et al. JMIR Diabetes (2016)
• Twitter is one of the dominant
public social networks
• Public as in everything is
out in the open
• Data in several communities
(#doc, #dsma) can be
reviewed in detail
SHOW ME THE DATA

36. SHOW ME THE DATA
Themes based on interviews
• Information to improve self-care
• Emotional support
• Belonging to a community
• Validation of information
• Cause for concern
• Interaction with healthcare providers
Qualitative Study on Participation
[15] Litchmann, PEC (2017)
#DOC’ers
Born 1946-1964
N = 20

37. SHOW ME THE DATA
“The DOC filled gaps in
knowledge and support
participants were not
able to get elsewhere”
[15] Litchmann, PEC (2017)
Qualitative Study on Participation
#DOC’ers
Born 1946-1964
N = 20

38. SHOW ME THE DATA
• Observational, analysis of responses to posted questionnaire (based on
validated instruments.
• ‘Through my participation in online support groups…’: 5-point scale
Impact on Empowerment
[16] van Uden-Kraan et al. Patient Educ. Couns (2009)

39. SHOW ME THE DATA
Content on Facebook
[17] Greene et al. J. Gen. Intern. Med. (2011)

40. [19] Gilbert et al, Diabetes Spectr (2012), [24]
A Reality Check
SHOW ME THE DATA
“Reality Check”
www.realitycheck.org.au/
13 years old, still active.
Analysed using surveys and
online focus groups.

41. [19] Gilbert et al, Diabetes Spectr (2012)
A Reality Check
SHOW ME THE DATA
“Online Communities Are Valued by
People With Type 1 Diabetes for
Peer Support: How Well Do Health
Professionals Understand This?”

42. “I think it’s only a matter of time
before the evidence catches up
with real life,
which seems to be common
in the diabetes community.”
- Ashley Ng, 2017

43. This is not diabetology,
it’s anthropology.

44. Thanks to DiabetesMine.com for letting me use this video.[20] (youtube.com/watch?v=5qvHTfRvnVw)

45. Thank you!
First one to ask a question,
gets a hug!
Fredrik Debong
@fdebong

46. ADDENDUM
[1] Website of Framingham Heart Study, http://www.framinghamheartstudy.org/"s-bibliography/index.php, accessed 17.10.2017
[2] N. A. Christakis and J. H. Fowler, “The spread of obesity in a large social network over 32 years.,” N. Engl. J. Med., vol. 357, no. 4, pp. 370–9, Jul. 2007.
[3] N. A. Christakis, “Social networks and collateral health e!ects.,” BMJ, vol. 329, no. 7459, pp. 184–5, Jul. 2004.
[4] B. Y. A. Lenhart, A. Smith, M. Anderson, M. Duggan, and A. Perrin, “Teens, Technology & Friendships: Video games, social media and moble phones play an integral role in how teens meet
and interact with friends.,” 2015.
[5] Search for “diabetes” on YouTube, https://www.youtube.com/results?search_query=diabetes. Accessed 18.10.2017
[6] Twitter search for #ozdoc, https://twitter.com/search?q=#ozdoc&src=typd. Accessed 18.10.2017
[7] Twitter search for #dsma, https://twitter.com/search?q=%23dsma&src=typd. Accessed 18.10.2017
[8] Blog of Ilka Gdanietz and Finn Köster, mein-diabetes-blog.com. Accessed 18.10.2017
[9] Website of TheFitBlog, https://thefitblog.com/. Accessed 18.10.2017
[10] Blog of Scott Johnson , https://scottsdiabetes.com. Accessed 18.10.2017
[11] Blog of Renza Siciblia, diabetogenic.wordpress.com/. Accessed 18.10.2017
[12] Instagram image by Brickabetes (https://www.instagram.com/brickabetes/), https://www.instagram.com/p/BTqW8PuDNnL/?taken-by=brickabetes. Accessed 18.10.2017
[13] Instagram page of of sugarsanity , https://www.instagram.com/sugarsanity/. Accessed 19.10.2017
References

47. ADDENDUM
[14] Y. Liu, Q. Mei, D. A. Hanauer, K. Zheng, and J. M. Lee, “Use of Social Media in the Diabetes Community: An Exploratory Analysis of Diabetes-Related Tweets,” JMIR Diabetes, vol. 1, no. 2,
pp. 1–8, 2016.
[15] M. L. Litchman, E. Rothwell, and L. S. Edelman, “The diabetes online community: Older adults supporting self-care through peer health,” Patient Educ. Couns., pp. 6–11, 2017.
[16] C. Van Uden-Kraan, C. Drossaert, E. Taal, E. R. Seydel, and M. A. F. J. van de Laar, “Participation in online patient support groups endorses patients’ empowerment,” Patient Educ. Couns.,
vol. 74, no. 1, pp. 61–9, 2009.
[17] J. A. Greene, N. K. Choudhry, E. Kilabuk, and W. H. Shrank, “Online social networking by patients with diabetes: A qualitative evaluation of communication with Facebook,” J. Gen. Intern.
Med., vol. 26, no. 3, pp. 287–292, 2011.
[18] E. Gabarron, M. Bradway, and E. Årsand, “What are diabetes patients discussing on social media ? [Abstract],” Int. J. Integr. Care, vol. 16, no. 5, p. S14, 2016.
[19] K. Gilbert, S. Dodson, M. Gill, and R. McKenzie, “Online Communities Are Valued by People With Type 1 Diabetes for Peer Support: How Well Do Health Professionals Understand This?,”
Diabetes Spectr., vol. 25, no. 3, pp. 180–191, 2012.
[20] Clip from YoutTube, https://www.youtube.com/watch?v=5qvHTfRvnVw. Accessed 9.6.2018.
[21] N. A. Christakis and J. H. Fowler, “The collective dynamics of smoking in a large social network.,” N. Engl. J. Med., vol. 358, no. 21, pp. 2249–58, May 2008.
[22] Blog of Phyllisa Deroze, http://diagnosednotdefeated.com/. Accessed 18.10.2017.
[23] YouTube page of Diabetic Danica, https://www.youtube.com/user/DiabeticDanica/about. Accessed 19.10.2017
[24] Online forum Reality Check, http://www.realitycheck.org.au/RCforum/. Accessed 20.10.2017
References