A talk I gave at the AOESC 2013 (Association of European Coeliacs Conference) in Amsterdam, discussing my preliminary research on the Digital Coeliac: Twitter, Social Media, and Coeliac Disease - Patterns and Sentiment.

1. Twitter & Coeliac Disease,
Patterns & Sentiment
The Digital Coeliac
— Sam Martin
PhD Candidate
University of Warwick
@digitalcoeliac
DigitalCoeliac.com

2. Twitter & Coeliac Disease
• Lots of discussion and questions re. self-managing Coeliac Disease

3. Coeliac Disease as an Issue on Twitter
• Issue Mapping using the Digital Methods Initiative’s Issue Crawler platform
• Who are the top five actors/websites discussing Coeliac Disease in the UK web sphere?
• Scrape the top 100 results in Google for the term “Coeliac” (UK specific spelling), and
visualise results as a co-link analysis map.

4. Coeliac Disease as an Issue on Twitter
• The final websites in the top 5 were, Twitter,
receiving the most in-links, and Facebook
second, followed by a series of allergen
information websites:
• twitter.com – 37,329
• facebook.com – 27,615
• foodsmatter.com – 25,360
• skinsmatter.com – 9,209
• coeliacsmatter.com – 7,286

5. Cross-fertiliastion: Twitter & Other Social Media
• Coeliacs use multiple platforms to communicate (e.g. Twitter, Facebook, Pinterest,
WordPress and Tumblr)
• Different mediums and various restrictions mean communication and the expression of
sentiment is different via each platform
• Efficient management either via their main platform or other services
• E.g. If they find something on Pinterest.com, they can use services like
“If This, Then That” (IFTTT.COM) to immediately post to Twitter, Facebook, and other social
media platforms
• This cross-fertilisation of social media allows us to study how Coeliacs use other networks via
Twitter

6. Cross-fertiliastion: Twitter & Other Social Media
Best practice for building websites/platforms that engage with Coeliacs:
• Give them the ability to share information from your site across social networks
that they are already engaged in

7. Social Media:
Under the Hood via Twitter
Facebook, Tumblr and Pinterest via Twitter
• Joint use of these platforms shows steady rise in Coeliacs’ use of social media
©Topsy.com
(Pro
Analy2cs),
September
2013

8. Social Media:
Under the Hood via Twitter
©Topsy.com
(Pro
Analy2cs),
September
2013
Facebook, Tumblr and Pinterest via Twitter
• Twitter = easier to chart varied sentiment of Coeliacs around key terms:
“gluten free”, “coeliac” and “celiac”

9. Social Media:
Under the Hood via Twitter
Facebook, Tumblr and Pinterest via Twitter
• Twitter = easier to chart varied sentiment of Coeliacs around key terms:
“gluten free”, “coeliac” and “celiac”
©Topsy.com
(Pro
Analy2cs),
September
2013

10. Twitter Mentions: Being Glutened
• Analyse sentiment of associated words used with term ‘glutened’
• Identify requests for help, sharing of commons knowledge & activism

11. Activism on Twitter: Being Glutened
“#coeliactivism”
• “Coffee-Gate” and “Tea-Gate” 2012
• Adverse reactions due to cross-contamination =
Coeliacs turn into investigative journalists
• They often name and shame manufacturers, or
hold them to public account on Twitter with
probing questions/alerts to cross-contamination
• New publications about Coeliac Disease are
never taken at face value, but questioned and
investigated (The rise of the ‘Expert Patient’
paradigm. Nettleton & Burrows, 2006)
Coffee-­‐Gate:
Ques.oning
published
ar.cles
Tea-­‐Gate:
X-­‐Contamina.on
&
Inves.ga.ve
Journalism

12. Twitter: Real Time Information on The Move
• #GFEatUp was an event organised by
Coeliac twitter members, where
people travelled to key gluten free
restaurant and cafes in London, to
socialise and share stories about their
gluten free experiences.
• Shows social networks like Twitter can
act as an instant source of support
and knowledge, where Coeliac users
on the move can get context-specific
information via their mobile phones
within minutes, and at a much faster
rate than searching for this information
via the web-browser on their phone.
• Thus, far from being isolating, the use
of the web to find and share
information while on the move also
leads to people creating wider social
networks offline.

13. Twitter Mentions & Foursquare:
Searching for Gluten Free
• Patterns of Collection
• Humans like to collect information, from places to eat, and great recipes to health information

14. Twitter Mentions:
Searching for Gluten Free
• Co-word analysis of associated words used with terms ‘gluten free’ via Foursquare platform
• Patterns = place, food type, sentiment

15. Twitter Mentions:
Searching for Gluten Free
• Co-word analysis of associated words used with terms ‘gluten free’ via Foursquare platform
• Patterns = place name, food type, sentiment, location

16. Twitter Mentions:
Searching for Gluten Free
• Co-word analysis of associated words used with terms ‘gluten free’ via Foursquare platform
• Patterns = place name, food type, sentiment, location, BRAND

17. Sentiment Analysis:
Different forms of Social Media
and Coeliac Mentions
Pinterest
• A visual medium, scrapbook collections with links to more data/information
• Search term: ‘coeliac’ = recipes
©
Pinterest.com,
September
2013

18. Sentiment Analysis:
Different forms of Social Media
and Coeliac Mentions
Pinterest
• A visual medium, scrapbook collections with links to more data/information
• Search term: ‘coeliac’ = lifestyle tips
©
Pinterest.com,
September
2013

19. Sentiment Analysis:
Different forms of Social Media
and Coeliac Mentions
Pinterest
• A visual medium, scrapbook collections with links to more data/information
• Search term: ‘coeliac’ = health articles
©
Pinterest.com,
September
2013

20. Sentiment Analysis:
Different forms of Social Media
and Coeliac Mentions
Pinterest
• A visual medium, scrapbook collections with links to more data/information
• Overall activity = steady increase in use via Twitter
©
Topsy.com,
Pro-­‐Analy2cs
Trial

21. Sentiment Analysis:
Different forms of Social Media
and Coeliac Mentions
Pinterest
• Under the Hood
• Sentiment = Mainly positive
• Why? = Standard descriptions of recipe/article names contain little negative sentiment
©
Topsy.com,
Pro-­‐Analy2cs
Trial

22. Sentiment Analysis:
Different forms of Social Media
and Coeliac Mentions
Tumblr
• Written, visual and audio medium = more room for self expression
©
Tumblr.com,
Pro-­‐Analy2cs
Trial

23. Sentiment Analysis:
Different forms of Social Media
and Coeliac Mentions
Tumblr
• Written, visual and audio medium = more room for self expression
• Sentiment = More varied sentiment expressed
©
Topsy.com,
Pro-­‐Analy2cs
Trial

24. Project Going Forward:
The Digital Coeliac: Navigating the City and Managing Health via Twitter
• Twitter, Facebook, Foursquare and other social media discussions
• Study how venues change when filtered with the lens of coeliac disease
• Map public annotation of these venues (hints, tips, categorisation)

25. Layered map will tell us what Coeliacs are saying about city venues
• Decision-making
(planning, questions about where to eat: “where can I find?”,
“can someone recommend?”, “help”, “tell me”)
• Risk-aversion (discussion about avoidance of being glutened through
having cross-contaminated food)
• Recommendation/sentiment
(comment re. food/service quality. Adjectives: “perfect”, “awful”)
• Knowledge identifier (mention of new or closed venue)

26. Coeliac Tweets: Dynamic Heatmap
Twitter Conversations: Heatmaps of London and New York
• Which areas of the city are most associated with self-management of Coeliac
Disease?
• How do Coeliacs discuss these venues?
• Different colours will show:
• Which venues/areas of the city elicit most questions re. eating out
• Which venues/areas have positive vs negative coeliac sentiment
• Which areas are used for ‘gluten free meet-ups’

27. Sam
Mar.n
University
of
Warwick
s.c.mar2n@warwick.ac.uk
@intothedigital
@digitalcoeliac
TwiJerabused.com
DigitalCoeliac.com