the digital coeliac: twitter and coeliac disease - patterns and sentiment

Twitter & Coeliac Disease, Patterns & Sentiment

The Digital Coeliac

�  Sam Martin PhD Candidate

University of Warwick @digitalcoeliac

DigitalCoeliac.com

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

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.

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

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

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

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



Facebook, Tumblr and Pinterest via Twitter •  Twitter = easier to chart varied sentiment of Coeliacs around key terms:

“gluten free”, “coeliac” and “celiac”

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

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

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.

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

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


•  Co-word analysis of associated words used with terms ‘gluten free’ via Foursquare platform •  Patterns = place name, food type, sentiment, location


•  Co-word analysis of associated words used with terms ‘gluten free’ via Foursquare platform •  Patterns = place name, food type, sentiment, location, BRAND

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


and Coeliac Mentions Pinterest •  A visual medium, scrapbook collections with links to more data/information •  Search term: ‘coeliac’ = lifestyle tips



and Coeliac Mentions Pinterest •  A visual medium, scrapbook collections with links to more data/information •  Search term: ‘coeliac’ = health articles



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


and Coeliac Mentions Pinterest •  Under the Hood •  Sentiment = Mainly positive •  Why? = Standard descriptions of recipe/article names contain little negative sentiment



and Coeliac Mentions Tumblr •  Written, visual and audio medium = more room for self expression

© Tumblr.com, Pro-‐Analy2cs Trial


and Coeliac Mentions Tumblr •  Written, visual and audio medium = more room for self expression •  Sentiment = More varied sentiment expressed


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)

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)

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’

Sam Mar.n

University of Warwick

[email protected]

@intothedigital

@digitalcoeliac

TwiJerabused.com

DigitalCoeliac.com