This paper explores the ways in which gamification can be used to create digital health and e-learning toolkits, that make use of co-occurring themes found in Big Social Health Data in the form of social media updates shared by patients with chronic illness. Within the context of Coeliac Disease, I discuss the methodological concepts behind the building of smartphone health apps that I have produced by utilising themes uncovered in the area of self-care and the experience of multiple symptoms on both Twitter and Instagram . I look at how from the perspective of gamification - the structure and methodology behind the design of these tools may in turn have the potential to help and encourage newly diagnosed, young or existing Coeliacs to better manage their gluten free diets. This may be through practices such as (for younger patients) positive embodiment in the form role-play (e.g. a super hero with chronic illness), or for older patients - the practice of meta-tagging/quantifying and sharing their gluten free eating experiences via image-based apps that add an additional layer of health-quantification through posts to Twitter, Instagram and other social media. By using these techniques, I hope to go to some way to addressing the question of how patient knowledge as it applies to their lived experience of chronic disease - can be made useful to people with chronic disease (Pols 2013).

1. PhD Thesis
My doctoral research explores
how individuals’ online
interactions via Social Media
inform the self-care of their
chronic conditions
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 Coeliac
Twitter, Instagram, the City and the Gut:
Learning how to self-manage chronic illness
through gamification

2. The Digital Coeliac
Summary
This talk will try to address the question of how patient knowledge as it applies to their lived
experience of chronic disease - can be made useful to people with chronic conditions (Pols 2013).
Through the lens of social media research:
1. Explore ways gamification can be used to create digital health and e-learning toolkits, that make
use of co-occurring themes found in Big Social Health Data in the form of social media updates
shared by patients with chronic illness.
2. Within the context of Coeliac Disease, I will discuss the methodological concepts behind the
building of smartphone health apps that I have produced by utilising themes uncovered in the
area of self-care and the experience of multiple symptoms on both Twitter and Instagram.
3. Discuss how practices such as positive embodiment in the form role-play for younger patients
(e.g. a super hero with chronic illness), and for older patients, the practice of meta-
tagging/quantifying gluten free eating experiences via image-based apps - add an additional
layer of digital health-quantification via social media.

3. The Digital Coeliac
Let’s start with an overview of Coeliac Disease – what is it?
• Coeliac Disease: a chronic autoimmune disease, where the
small intestine is hypersensitive to gluten, leading to difficulty in
digesting food.
• When a Coeliac ingests gluten, an autoimmune response will
cause the body to attack and damage the lining of the small
intestinal 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.
• Currently no medical cure for the disease, and the only
treatment is a lifetime gluten free diet.
• Strict avoidance of wheat, rye and barley.
• 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).

4. The Digital Coeliac
What 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 stomache 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)

5. The Digital Coeliac
Symptoms of Coeliac Disease
Infographic extracts
© GlutenFreeDude.com:
http://glutendude.com/celiac/celiac-
disease-symptoms/

6. • 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

7. The Digital Coeliac
Issues faced post diagnosis = Lots of discussion and
questions re. self-managing Coeliac Disease

8. • “As Pols (2014) has argued for patient knowledge in general, this knowledge is a
practical knowledge, that does not sit inside textbooks or in heads. It is part of
practices, devices, and situations. (p. 83). Keeping diaries of heart-rhythm
disturbances, measuring heart- beats, listening to beeps early in the morning, slowly
walking stairs, all contribute to gaining knowledge of what it entails to keep hybrid
bodies alive.” Oudshoorn, 2015
• In a similar way, research has found that patients can be seen to be using social media
keep visual and status diaries of their practical experience and growing knowledge of
managing their gluten free diet, from going through the process of diagnosis, learning
how to adapt to the gluten free diet, the experience of the symptoms of being
accidentally glutened, to finding new food venues.
The Digital Coeliac

9. 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?

10. Self-Care from the mundane to the imaginative:
Using social media to gamify self-care of chronic disease
Examples: Coeliacs share artistic portraits of Gluten Free food via creative photo diaries
on Twitter and Instagram
The Digital Coeliac

11. 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 Coeliac
Reciprocal behaviour: Tweeted questions in
relation to space and place

12. Self-Care from the mundane to the imaginative:
Using social media to gamify self-care of chronic disease
Examples
• meme poetry with images
= poem about the experience of
the symptoms of being glutened:
The Digital Coeliac

13. Self-Care from the mundane to the imaginative:
Using social media to gamify self-care of chronic disease
Examples
• Playing with popular terms: #50shadesofCoeliac: A contest using the context of the
film “50 Shades of Grey” to find the funniest ways to represent the mundanity of
finding safe gluten free food as a Coeliac eating out
The Digital Coeliac

14. The Digital Coeliac
Gamification, mixed with chronic illness discussion
• Textual analysis shows that while this is going on, patients are actually highlighting
specific personal and medical components of their illness on public forums like Twitter
and Instagram, including the sharing of medical results, multi-morbidity illnesses, and the
documenting of what it feels like to experience symptoms
• 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.

15. Coeliac Tweeters’ interrogation of medical results
• 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

16. The Digital Patient
Health & Big Data Research: From Big Data to Small Data to Wide Data
• My main research into Coeliac Disease and chronic long-term conditions has amassed
the following:
Twitter: 300,000 tweets and 600,000 hashtags
Instagram: 250,000 images and posts, 700,000 hashtags
• That’s a lot of data!
• Main criticism of ‘Big Data’ research is that looking at it en-masse via sentiment
polarities, word frequencies and mapped data outputs e.g. (tweets and Instagram
posts) is only scratching the surface

17. The Digital Patient
Health & Big Data Research: From Big Data to Small Data to Wide Data
Suggested that when looking at patient activity within big social data - we need to find a
middle-ground of mixed methods proportions, where:
• Big Data is divided up into Small Data samples based on key patterns,
investigated with a mix of qualitative and quantitative methods, and patterns found
there are expanded into Wide Data
• This leads to a deeper sociological and patient-focused understanding of ‘what’
and ‘why’ behind sentiment polarities, word frequencies, and co-occurrences
.
• The following slides illustrate this, and investigate what else can be done with this
data

18. The Digital Coeliac
The Problem with Big Data…
Basic geo-tagged visualisation shows us central clustering, but not much else…
Temporal visualisations: Tweet Clusters in cen
tral
New York City from October 2013 – March 201
4

19. The Digital Coeliac
The Problem with Big Data…
Basic geo-tagged visualisation shows us central clustering, but not much else…
Temporal visualisations: Tweet Clusters in cen
tral
London from October 2013 – March 2014

22. The Digital Coeliac
Using Social Media Self-Reporting to help those newly diagnosed with
Chronic Conditions
What else can we do with this Big Data?
How can we address the question of how to make useful self-reported patient knowledge
as it applies to their lived experience of chronic disease – so that it can also help others
cope with chronic illness (Pols 2013)?
It’s all very well writing about the patient experience, but is there a way that we can use
patient experience data found in the wild to help those that are newly diagnosed, or
younger patients, who may need help or some positive reinforcement in coming to terms
with living with a life-long chronic condition?
• How can we make good with all this big social data?
• Can we turn this relational data into a learning tool?
• Can lay people and children learn through play?

23. The Digital Coeliac
Using Social Media Self-Reporting to help those newly diagnosed with Chronic Illness
• Take the most co-occurring data related to symptoms, and visualize this into an interactive
game, where the character is a super hero, and the ‘monsters’ she fights are gluten-
contaminated food with little teeth that seem to gnaw away at her gut.
• ‘Monsters’ are how some users have described being tempted by gluten-containing food, and
the stomach pain and fading energy symptoms described after eating it.
• How do we explain this concept of feeling
symptoms to children/adults, and
empower them in a fun way?
• A smartphone game with basic concepts?
• A superhero that has the same symptoms
as them?
Coeliac Sam
© Sam Martin, 2015
Gluten Free
Not Gluten Free
Most common hashtags co-occurring with tweeted
symptoms = #fading, #weak, #pain

24. The Digital Coeliac
Main aims of app:
• To give positive reinforcement to patients, in making the concept of searching for gluten free
food fun, and visualizing the fading energy experienced when touching ‘glutened’ food.
• To emphasise things like ‘Health’ points as instances of wellness, and high energy fruits like
strawberries and smoothies, which Coeliacs reported as their go-to when glutened.
Coeliac Sam
© Sam Martin, 2015

25. The Digital Coeliac
• The Coeliac Sam experiment was launched as a free app game
in August 2014, with just over 1000 installs in total on both iOS
and Android phones.
• The basic concept was explained in the App store description,
and in just over a year, feedback from users showed that they
found some positives from playing the game.

26. The Digital Coeliac
Helping Adults Visually Quantify their prescribed diets
However while Coeliac Sam has potential for helping younger Coeliacs, what can be done for
older Coeliacs and other sufferers of chronic disease, especially using self-reported data via
visual social media?
• Social media in general has become increasingly more visual, and on places like Instagram,
the image is often the first thing you see, with no real information about the context of the food –
if it is food as medicine, or more until one scrolls down to the text and hasthags positioned below
each post.
Instagram
post on default
smartphone
screen
Text and hashtags
revealed on scroll-
down

27. The Digital Coeliac
Helping Adults Visually Quantify their prescribed diets
• Lots of photo meme apps out there, where users can add
text, stickers and filters to images before posting them on
visual apps like Instagram, or Tweeting and sharing them
on Facebook
• But, a noticeable lack of image-based apps that have options
that are chronic-illness focused, and which users can utilize
to visually tag photographs of food that are ‘free from’ specific
and linked to the self-care and self-management of their
health and chronic conditions.
• There is a gap to be filled, where a chronic illness tagging app, can act as a link
between the taking of sign-post and informational images, and sharing of these on
social media.

28. The Digital Coeliac
Gamify Hash-tagging for Health = eHealth Toolkit & Tagging App: “InstaFreeFrom”
• InstaFreeFrom: designed to give users visual tagging and sign-posting functionality, but also acts
as a research toolkit, with an internal commenting and sharing system that can be used to
encourage patients to visually tag and track prescribed diets.

29. The Digital Coeliac
Conclusion
• Patients have shown a knack for utilising and gamifying general social network technology to
help them manage the mundanity of their own long-term chronic conditions are actively sharing
self-care and lived experiences about symptoms via social media
• They fill in gaps in knowledge about where to find resources on the move, and offer relational
support to each other via chronic disease hashtags like #cfs #spoonie #ibs #me #cfsme
#coeliacs #celiacs #glutenfree)
• This activity places an additional layer of health-quantification and self-care empowerment
via image-diary posts to social media. To be used across range of chronic conditions, from CFS
to IBS and other long-term conditions.
• There is great potential to utilise this data via eHealth toolkits and apps for improving digital
health-based resources, and education of individuals about chronic disease

30. The Digital Patient:
Critique in the Digital Age
Sam Martin
email: s.c.martin@warwick.ac.uk
twitter: @digitalcoeliac
web: www.digitalcoeliac.com
www.coeliacsam.com