From 2002-2004, the UK government piloted the Expert Patient Programme of self-management training courses for patients with long-term conditions, and subsequently rolled the model out nationwide (I. Greener, 2008). Since it’s deployment, however, recent trends have shown growing public interest in engaging with the self-care of health outside of traditional NHS services (Bupa, 2012), and that technological disrupters such as social networks and apps have instead created a more immediate and accessible format in giving patients a forum to share feedback, experiences and learn from other patients on how to manage their own conditions (Corrie & Finch, 2015). While extensive studies have been made of patient-oriented social network platforms like PatientsLikeMe.com (Whitmore & Kempner, 2012; Tempini, 2014) - little is known about how patients informally create and share text-based and visual knowledge with each other via social media platforms like Instagram and Twitter. This paper contributes to the literature by critically examining patient behavior on these two platforms via analysis of the use of patient formulated hashtags linked to chronic autoimmune diseases and shared images used to represent chronic disease through the practices of daily self-care. I discuss how this use of mobile technology brings a new meaning to Foucault’s notion of ‘technologies of the self’, and how this adds to the reconfiguration of ‘expertise’ in matters of health and illness in general and the management of chronic illness in particular (Rose 2007). In the 21st Century it seems that patients are becoming more engaged in the formation of new biomedical subjectivity. Individuals informally use smartphones and more to perform the narration and technique of the biosocial self and become experts in the micro-constituents of factors needed for the self-care of their specific autoimmune/genetic illness. To this end, I also discuss how general healthy eating terms like #cleaneating have been appropriated by chronic illness communities with a focus on the biosocial - in the process of informally self-quantifying their experience of long-term conditions.

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 Patient:
From New Expert to Digital Quantifier
and Qualitative Image Diarist

2. The Digital Patient
• From 1999-2004, (in an extension of the US ‘Third Way’ project) the UK
government piloted the Expert Patients Programme of self-management training
courses for patients with long-term conditions, and subsequently rolled the model
out nationwide (I. Greener, 2008).

3. The Digital Patient
• Since it’s deployment, however, and despite Expert Patient schemes continuing
across most regional health authorities, recent trends have shown growing public
interest in engaging with the self-care of long-term conditions outside of traditional
NHS services (Corrie & Finch, 2015)
• Most specifically technological disrupters such as social networks, mHealth apps, and
search engine algorithms have increasingly created a more immediate and accessible
format in giving patients a forum to share feedback, experiences and learn from other
patients about how to manage their own conditions (Corrie & Finch, 2015).
• Although my research of social media data has found individuals rarely report being
involved in face-to-face NHS Expert Patient Programmes (EPP) in their region, I have
found that echoes of “Governmentality” and “Healthism” from the EPP are still found in
the Big Social Data mined from Social Media, in terms of patients reporting health
authorities emphasizing that patients need to take overall responsibility of their health.

4. The Digital Patient
Patient Experts via necessity – utilisation of social media design for biosocial needs
• The Expert Patient Care model, has been argued to have quite a Foucaultian edge to it,
“disciplining the long-term ill to look after themselves and reduce their demands on drugs
(and hence drug expenditure) and on health professional time to attempt to free up
doctors’ and nurses’ resources towards other goals (Wilson, 2001, Greener, 2008)”.
• Baring this in mind, and because of the echoes of Foucault that I have also found in the
data, I have categorised my findings within the 3 categories of Foucault's Technologies of
Self.
• However, because these categories do not necessarily focus on collective relational
community and group actions also found in the data, I later look at notions of Digital
Habitus and relational connections within online health communities

5. The Digital Patient
Self-Care, Foucault and Technologies of the Self: 3 Stoic Technologies
• Foucault referred to Disclosure, Examination and Remembrance as the three stoic
technologies of the self (Foucault 1988).
• Disclosure of the self can be described as the cultivation of the self and identity in
terms of ones cultural roles and movements in society.
- For Coeliacs, the new cultivation of the self via social media may come in the
form of sharing their gluten free journey, which may be from pre-diagnosis
(i.e. blood tests, ‘The Gluten Challenge’ (Coeliac UK 2014) deliberately eating
gluten pre-biopsy/endoscopy) to long-term life as coeliac on gluten free diet.

6. The Digital Patient
Foucault and Technologies of the Self: 3 Stoic Technologies
• Examination of the Self = ‘Taking stock’ and ‘self-reflexivity’.
- For Coeliacs, this can be in the form of frequent posts on social media
involving the examination of individual behaviour in following the gluten free
diet, and self-reflexivity - more so in times of accidental glutening (e.g. “what
did I eat that made me unwell…?”)

7. The Digital Patient
Foucault and Technologies of the Self: 3
Stoic Technologies
• Remembrance of Self = ‘Memorizations of
Deeds’ that can be related to via the capturing
and recording of practices via archives.
• These practices can also be ‘gamified’ to make
them more fun, for example via creative photo
diaries, the creative use of hashtags and more:

8. The Digital Patient
Patient Experts via necessity – utilisation of social media design for biosocial needs
• What I’ve found throughout my research is patient’s appropriation of general social media
for their own biosocial needs, especially when it comes to gut-related diseases, or chronic
conditions that may be alleviated by a change in diet
• In an age where awareness of food intolerances and autoimmune diseases associated
with food are more prevalent, the focus on what foodstuffs are allowed to enter the body
is even more acute.
• Lupton writes, “Achieving good health through diet has become a matter of acquiring
expertise in the micro-constituents of foodstuffs” (Lupton 2012).
• This applies most directly to hashtags such as #cleaneating and #foodasmedicine - as the
micro-constituents and distinctive properties of foodstuffs are indicated as key factors in
controlling autoimmune diseases like Coeliac Disease (the gluten free diet),

9. The Digital Patient
Patient Experts via necessity – utilisation of social media design for biosocial needs
• This overlap in the use of food as medicine and food as control in the practice of the
technologies of self has of course led to controversies over the viability of specific ‘free
from’ diets, such as the gluten free diet
• The appropriation of this diet by both the aesthetically body conscious, and those with
specific food intolerance or autoimmune diseases has lead to controversies over the
availability of gluten free foods both in general contexts, and the availability of different
types of gluten free food (healthy and non-healthy staples) and e.g. for Coeliacs on
subsidised prescription (Pietzak 2012).

10. The Digital Patient
• Patients are more frequently turning to search engines and social media to find out
more information about health issues. 72% of internet users say they looked online for
health information within the past year (Pew Research, 2015).
• This is further reflected in Google’s recent medical algorithm update. In September
2015, Google updated it’s medical knowledge panel by 900 medical conditions.
• A search for a medical condition now automatically produces a medically vetted box,
giving you the general summary, symptoms and treatment factors for that illness, as
well as a downloadable PDF that you can print out and take to your physician
• On it’s medical searches website, Google says it get’s this data through a combination
of:
“...algorithms and medical professionals to create this medical information.
First, our algorithms find and analyze health-related information from
high-quality sites across the web. Then, teams of doctors carefully review
and refine the information and licensed medical illustrators create the visuals.”

11. The Digital Patient
• Google have also expanded the sources for this information in the US. Now listing a
wide variety of sources, such as Nature, Science Direct, the Mayo Clinic and
government health agencies:

12. The Digital Patient
• An interesting sub-feature is revealed when you look up a chronic disease and its
treatment (e.g. “Coeliac Disease treatment”), Google also gives you the most
frequently searched questions by lay people, and corresponding official medical
answers given by medical organizations (in this case, Coeliac UK):

13. The Digital Patient
Google Health: From general searches to an “Expert Filter Bubble”?
• What is also interesting is that after just over a decade of public health commentary
and dismay at the unfiltered amount of information available about health on the
internet – some of it potentially harmful to individuals who find it – Google are
effectively putting general searches for health back into an expert “filter bubble”
(Pariser, 2012).
• Searches for general and chronic diseases no longer purely rely on general search
algorithms, health articles written by non-professionals and blogs or health forums,
but are now filtered by ‘expert sources’.
• While this may fill some with a sense of relief, that at least some vetted and contained
information is now available to the general public within the medical knowledge box,
others may still question the viability of having ones searches so closely filtered.

14. The Digital Patient
Health & Big Data Research: From Big Data to Small Data to Wide Data
• What my research does (with a focus on Coeliac Disease) is look at what happens
after a person has searched for information about a suspected or diagnosed disease,
and the kind of information found and shared via social media
• My main research into Coeliac Disease and chronic long-term conditions =
Twitter: 300,000 tweets and 600,000 hashtags
Instagram: 250,000 images and posts, 700,000 hashtags
• This is 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

15. The Digital Patient
Health & Big Data Research: From Big Data to Small Data to Wide Data
• It is suggested that what we need is 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 mixture of qualitative and quantitative methods, and
patterns found there are expanded into Wide Data, with a deeper understanding of
‘what’ and ‘why’ behind sentiment polarities, word frequencies, and co-occurrences
.
• These are the methods I utilise in my research

16. The Digital Patient
Health & Big Data Research: From Big Data to Small Data to Wide Data
• As an extension of this, today I will discuss what happens with other ‘hidden’ chronic
diseases, such as IBS, CFS or MS and how inviduals share thier lived experiences
and support others as they go about daily practices of self-care and self-management
• A key term that has been increasingly used on social media is the term “spoonie”,
which refers to an individual who suffers from a chronic illness, and how they
hypothetically measure out their ability to carry out daily tasks by counting “spoons” of
energy, and allowing for situations when the amount of “spoons” or feelings of
wellness come up short. The term originated from a post written by Christine
Miserandino entitled “The Spoon Theory” (Miserandino, 2003). Since that post,
"spoonie" and "#spoonie" have been used on sites like tumblr, to connect people
living with chronic illnesses.

17. The Digital Patient
#Spoonie + #cleaneating = Biosocial Health vs Social Health
• The hashtag #spoonie is used by a host of chronic sufferers of IBS, Hypothyroidism,
CFS and more, and outside of blogs, can most specifically be found on Twitter and
Instagram
• What is interesting however, is the increased use of #spoonie with other ‘healthy
lifestyle’ hashtags used by the healthy eating and body-building community on
Instagram – here Spoonies (and non-spoonie chronic condition suffers) seem to have
appropriated ‘healthy lifestyle’ hashtags like #cleaneating and #cleaneats and are
using this in combination with the #spoonie hashtag
• This combined use of healthy social and what I will call biosocial (Rose 2007) terms
has spawned some interesting patterns in my analysis of data output from these
networks

18. The Digital Patient
#Spoonie + #cleaneating = Biosocial Health vs Social Health
• When analysing data on just the #cleaneating hashtag, visual analysis showed a
fairly standard pattern, where those using the #cleaneating hashtag for body-building
and dieting mainly posted selfies of thier weight-loss or body toning gains, together
with some images of the #cleaneating foods they were consuming

19. The Digital Patient
#Spoonie + #cleaneating = Biosocial Health vs Social Health
• When analysing data on just the #cleaneating hashtag, text and hashtag analysis
showed a fairly standard pattern, again, where the majority of hashtags referred to
body-toning, focus on working out and eating for gaining muscle mass and healthy
living

20. The Digital Patient
#Spoonie + #cleaneating = Biosocial Health vs Social Health
• However, when analysing data on just the #cleaneating hashtag in co-occurrence
with the #spoonie hashtag, a more complex world of the use of food as medicine was
revealed.
• Visual analysis showed that there was a 30% increase in the amount of pictures of
food, and in relation to this, a 40% increase in the specific micro-constituent listing of
ingredients with each photo

21. The Digital Patient
#Spoonie + #cleaneating = Biosocial Health vs Social Health
• However, textual and hashtag analysis showed that the degree of mentions of multi-
morbidity diseases and the use of the #cleaneating diet to manage these was immense
• The following hashtag graph shows the hashtag network of an 18 year old Spoonie,
who used instagram to document her illness(es) over a 3 year period – you can see the
different diseases she also mentions, in relation to different diets she has tried
(vegetarianism, dairy free, gluten free and clean eating):

22. The Digital Patient
#Spoonie + #cleaneating = Biosocial Health vs Social Health
• The following hashtag graph shows the hashtag network of an 35 year old Spoonie,
who used Instagram to document his ME and CFS (blue nodes) over a 1 year period –
you can see the different diets (green nodes) he has tried as an aid to help him manage
his illness:

23. The Digital Patient
Most common hashtags co-occurring with tweeted symptoms = #fading, #weak, #pain
Future work
Visually conceptualising Chronic Disease…
• Can we turn this relational Social Media 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, 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

24. The Digital Coeliac
Future work
Visually conceptualising Chronic Disease…
Can we learn through play?
Coeliac Sam
© Sam Martin, 2014

25. The Digital Coeliac
Initial Patient Feedback
• 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

26. The Digital Coeliac
So what can we do to better help/study how Chronic Patients use Social Media?
• 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”
• Gamify Hashtagging for Health = Instagram Tagging App: “InstaFreeFrom”

27. The Digital Coeliac
Conclusion
• Spoonies and 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#spoonie #cleaneating #coeliacs #celiacs #glutenfree)
• Although the experience of the ‘Expert Patient’ is more and more utilised online than of
fline – the notion of this policy and its practice in the NHS and US health systems is stil
l echoed in the self-care practices of patients via social media networks
• There is potential to utilise this data for improving health-based resources, and
education of individuals about chronic disease

28. The Digital Patient:
From New Expert to Digital Quantifier
and Qualitative Image Diarist
Sam Martin
email: s.c.martin@warwick.ac.uk
twitter: @digitalcoeliac
web: www.digitalcoeliac.com
www.coeliacsam.com