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: s.c.martin@warwick.ac.uk

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

Twitter

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: s.c.martin@warwick.ac.uk

twitter: @digitalcoeliac

web: www.digitalcoeliac.com

www.coeliacsam.com