The Digital CoeliacTwitter, the City and the GutHow Coeliacs find food & re-write the city
landscape with health-related knowledge
PhD Thesis
My doctoral research explores
how individuals’ online
interactions inform their health-
navigation of the city.
With the case study of coeliac
disease, my research aims to
visualise the flow of patient
interaction through Twitter to
detect patterns of decision-
making and risk-aversion, by
creating a virtual map of Big
Data health annotations
comparing the cities of London
and New York.
Sam Martin
email: [email protected]
twitter: @digitalcoeliac
web: www.digitalcoeliac.com
www.coeliacsam.com
The Digital CoeliacWhat is Coeliac Disease?
• Coeliac Disease is a chronic autoimmune disease, in which the small
intestine is hypersensitive to gluten, leading to difficulty in digesting food.
• There is currently no medical cure for the disease, and the only treatment is a
lifetime gluten free diet.
• This means strict avoidance of wheat, rye and barley.
The Digital CoeliacWhat is Coeliac Disease?
• Coeliac Disease affects an estimated 1 in 100 people in the UK
(Coeliac UK, 2014)
• However only 24% who have the condition have been diagnosed which
means there are currently nearly half a million people who have coeliac
disease but don’t yet know - with the long term risk of osteoporosis or even
bowel or skin cancer without treatment (Coeliac UK, 2014).
• There has been a fourfold increase in the incidence of CD in the United
Kingdom over 22 years (West et al. 2014)
The Digital CoeliacWhat is Gluten, and how does it affect the Coeliac body?
• Gluten is a mixture of 2 proteins present in cereal
grains, esp. wheat, and is responsible for the elastic
texture in dough (found in things like wheat flour, bread,
pasta, pizza and hidden in gravy, sausages, and soy
sauce).
• When a Coeliac ingests gluten, an autoimmune
response will cause the body to attack the lining of the
small intestine.
• This leads to damage to the villi (small finger like
projections lining the gut). These are flattened reducing
the surface area of the gut, preventing food and
nutrients from being properly absorbed.
• This can lead to malnourishment and anaemia.
The Digital CoeliacSymptoms of Coeliac Disease
Infographic extracts © GlutenFreeDude.com: http://glutendude.com/celiac/celiac-disease-symptoms/
The Digital CoeliacWhat is Coeliac Disease?
• Coeliac Disease is often diagnosed from the 3rd decade of life onwards, with
symptoms that are often mis-diagnosed as other illness, or, with things like
joint pain and digestive problems – sometimes put down to the process of
aging (West et al., 2014; Coeliac UK, 2014)
• So what happens when a full diagnosis is made, and a Coeliac must self-
manage a life-time prescribed gluten free diet?
• New life-long Gluten Free Diet
• Previous food knowledge & practices no longer valid
The Digital Coeliac: Diagnosis
W.O.W.
Wall Of Wheat !
• Rebuild food knowledge & expand social network ties
The Digital Coeliac
How can we analyse this re-building of food-based social capital?
My Research Questions:
1. Once diagnosed how do Coeliacs find and share information about self-
managing their chronic disease and their prescribed gluten free diet?
2. Specifically, how do they communicate the previously unspoken and
embodied experience of pain and symptoms via social media?
The Digital CoeliacIssues faced post diagnosis = Lots of discussion and
questions re. self-managing Coeliac Disease
The Digital CoeliacTwitter used as relational health networks
• Twitter networks are inherently relational and directed (Hogan and Wellman,
2014), with people following each other, and weak ties meaning that information
is shared easily been users who may not have strong relationships.
• Information is found mainly via searches for key words, hashtags, and ultimately
following others.
The Digital Coeliac
How Coeliacs share health-based information
within their relational Twitter networks
Question:“Travelling to X. Where can I f
ind #glutenfree restaurant? #coeliac
Coeliac A
Coeliac #B
Coeliac #C
Answer:“@Coeliac-A. Try X – they serve
great #glutenfree food? #coeliac
Retweeted Question:RT “Travelling to X. Where can I
find #glutenfree restaurant? #coeliac MT @Coeliac-C Help?
The Digital CoeliacCan we look at Coeliacs doing on Twitter
through the lens of Relational Sociology?
Habits vs Habitus?
• Lots of debate as to the meaning of ‘Habitus’.
• The social facticity of habitus is central to Bourdieu
• Crossley (2013) “There is no single, authoritative and consistent definition of it in
Bourdieu’s work. He continually revises it in order to both address criticisms and meet
the demands raised by his successive empirical projects.”
• Mauss (1979), Weber (2004), Elias (1996) and Deleuze (2004), all develop and use a
concept of habitus in their work. But, though there are similarities, their versions differ
(Crossley, 2013).
The Digital CoeliacCan we look at Coeliacs doing on Twitter
through the lens of Relational Sociology?
Habits vs Habitus?
• Along with many other sociologists, Crossley tries to tackle the problem of what
really is Habitus - has the concept been confused over time? Can we break it
down to basics (2013)?
• Habit = Habit involves individual meaning, understanding and (practical)
knowledge in every day actions, it is a learned behaviour, usually repeated
automatically”.
• Habitus = “To acquire habitus is to acquire means of knowing, handling and
dealing with the world.”
The Digital CoeliacCan we look at Coeliacs doing on Twitter
through the lens of Relational Sociology?
Habits vs Habitus?
• Dewey and Merleau-Ponty both locate the process of habit formation
within the context of interaction between human actors and between
those actors and their environments (Crossley, 2013).
• If this is true, Crossley asks: “Do the habits which cluster together and
characterize particular groups manifest a consistency which, in turns,
signals their attachment to a deeper orientation towards the world? If
so, is it this deeper structure that merits the term ‘habitus’ and that, for
sociological purposes at least, distinguishes habitus from habit?”
(2013)
The Digital CoeliacCan we look at Coeliacs doing on Twitter
through the lens of Relational Sociology?
• Thus for Coeliacs, can the interaction between actors on Twitter in the
context of finding gluten free food and experiencing symptoms in their
immediate environments be seen as a process of new habit
formation?
• And within the context of Coeliac Disease, does the change of food
habit to a prescribed gluten free diet, and the collective group sharing
of the bio-social symptoms of the disease based around this specific
chronic condition = habitus?
• Coeliacs use multiple platforms to communicate (e.g. Twitter, Facebook, Pinterest, WordPress
and Tumblr)
• 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
Cross-fertiliastion: Twitter & Other Social Media
©Topsy.com (Pro Analytics), September 2013
The Digital CoeliacTwitter: Sentiment Analysis: 2006 – 2013
Rise in positive sentiment around hashtags: #coeliac #celiac and #glutenfree
The Digital CoeliacSentiment Analysis: The Rise of the Gluten Free
food industry reflected in daily Tweeting practices
• 10 of top 30 Tweeters in
Coeliac network are Gluten
Free food companies
• May add to skewed results of
positive sentiment due to
heavy marketing practices
• Need to bear this in mind
when analysing Twitter
corpora and patient hashtag
communities
Smaller samples: 39 Twitter Mentions:
Being Glutened• Sentiment Analysis of associated words used with term ‘glutened’
• Identify requests for help, sharing of commons knowledge & activism
The Digital Coeliac
The Digital CoeliacActivism on Twitter:
Being ‘Glutened’ = #coeliactivism
• 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
August 2012
“Tea-Gate” 2012 – 2014
The Digital CoeliacActivism on Twitter: Being ‘Glutened’ = #coeliactivism
August 2012 April 2014
“Tea-Gate” 2012 – 2014
Coeliac Tweeters’ use of medical terms
• Co-occurence analysis of hashtags = just under a quarter of hashtag terms
used discussed medical issues to do with coeliac disease.
• These included words associated with presenting symptoms, medical tests,
diagnoses (#dx), possible associated diseases that were being tested for
(#thyroid, #ibs), and more general discussions around health and the gluten
free diet.
The Digital Coeliac
Coeliac Tweeters’ use of medical terms
• Word-pair analysis of “blood” and “test” (below), shows discussions that
concern negative blood tests, and asking GPs and charities for more
information.
The Digital Coeliac
The Digital Coeliac: Tweeting the MedicalCoding for medical behaviour (DiscoverText, 2014)
Codes revealed a combination of helpful patterns of behavior:
1. Discussing gluten free venues and products,
2. Helping others,
3. Discussing medical issues of diagnosis or research,
4. Sharing opinion of gluten free foods and services
The Digital CoeliacTemporal visualisations: Tweet Clusters in central
New York City from October 2013 – March 2014
The Problem with Big Data…Basic geo-tagged visualisation shows us central clustering, but not much else…
The Digital CoeliacTemporal visualisations: Tweet Clusters tweeted in
London from October 2013 – March 2014
The Problem with Big Data…Basic geo-tagged visualisation shows us central clustering, but not much else…
Break things down: Medium Data Samples + Qualitative Analysis = More InsightCo-occurrence Analysis: “#celiac + #glutenfree + where OR café OR find OR restaurant”
The Digital CoeliacTemporal visualisations: Tweet Clusters and top co-occuring
keywords tweeted in New York City from October 2013
– March 2014
27% of Tweets contain
Tweets about Coeliac
health & Symptoms
The Digital CoeliacTemporal visualisations: Tweet Clusters top co-occuring keywords
tweeted in London from October 2013 – March 2014
Break things down: Medium Data Samples + Qualitative Analysis = More InsightCo-occurrence Analysis: “#coeliac + #glutenfree + where OR café OR find OR restaurant”
38% of Tweets contain
Tweets about Coeliac
health & Symptoms
The Digital CoeliacTemporal visualisations
What buildings are Coeliacs near when
they tweet? What can this tell us about local spatial environment and how this affects
Coeliac movement? (Anonymous tweets in NYC from Oct 2013 – Nov 2014)
Break things down: Medium Data Samples +
Qualitative Analysis = More Insight
Pull in Google Street View to identify shops
associated with tweeted (anonymous) hashtags:
“#coeliac + #glutenfree + where OR café OR
find OR restaurant”
A Coeliac near Charing Cross Station requests info re. finding gluten free
afternoon tea in Central London, receives reply, and later enjoys afternoon tea
at Fortnum and Masons.
The Digital CoeliacReciprocal behaviour: Tweeted questions in relation to
space and place
The Digital CoeliacThe Coeliac in Popular Culture: Can I eat this…? Twitter: Coeliacs share videos of Gluten Free Diet in popular culture
Maybe he should tweet a question…
© Family Guy, Fox Networks, 2013
The Digital Coeliac
Most common hashtags co-occurring with tweeted symptoms = #fading, #weak, #pain
Future workVisually conceptualising Coeliac Disease…
• Can we turn this relational Twitter data into a learning tool?
• Can lay people and children learn through play?
• How do we explain this concept of feeling symptoms to children/adults, andempower them in a fun way?
• A smartphone game with basic concepts?• A superhero that has the same symptoms
as them?
Coeliac Sam
© Sam Martin, 2014
Gluten Free
Not Gluten Free
The Digital CoeliacFuture workVisually conceptualising Coeliac Disease…
Can we learn through play?
Coeliac Sam
© Sam Martin, 2014
The Digital CoeliacSo what else are Coeliacs doing, and how does this feed
into Twitter?
• Using smartphone Apps to locate gluten free resources, like the official Coeliac UK
app
• Tweet based apps, like “Twizzo LDN”, offers tweeted reviews of restaurants (not yet
gluten free specific
• Location-based apps like “Gluten Free London” & “Gluten Free Paris”
The Digital CoeliacConclusion:
Re-writing the city landscape with health knowledge
Twitter:
• Coeliacs actively share experiences about symptoms, and how it pertains to the body
• They fill in gaps in knowledge about where to find gluten free resources in the city, & offer
relational support to each other within Twitter (found via chronic disease hashtags like
#coeliacs #celiacs #glutenfree)
• There is potential to utilise this data for improving health-based resources, and education of
individuals about chronic disease
The Digital Coeliac
References
• Coeliac UK, 2014. “About coeliac disease and dermatitis herpetiformis”
(Accessed 12 November 2014) URL: https://www.coeliac.org.uk/coeliac-disease/about-coeliac-di
sease-and-dermatitis-herpetiformis/
• Crossley, N., 2013. Habit and Habitus. Body & Society, 19(2-3), pp.136–161
• GlutenDude.com “Celiac Disease Symptoms (from Those Living with the Disease):
An Infographic” (Accessed May, 2104) URL: http://glutendude.com/celiac/celiac-disease-sympto
ms
• West, J. et al., 2014. Incidence and Prevalence of Celiac Disease and Dermatitis Herpetiformis in
the UK Over Two Decades: Population-Based Study. The American journal of gastroenterology,
109(5), pp.757–68.
The Digital CoeliacRe-writing the city landscape with health knowledge
Sam Martin
email: [email protected]
twitter: @digitalcoeliac
web: www.digitalcoeliac.com
www.coeliacsam.com