CAPÍTULO III. EVALUACIÓN DEL MODELO DIDÁCTICO.
3.2 Organización del pre experimento pedagógico.
This chapter provides an illustrative example of how the gamification of social media analysis and patient knowledge with regards to the symptoms of CD can be used to create an app that visualises the concept of CD. I deal with Pols’ (2013a) discussion about how we can make use of patient knowledge relating to how they manage their chronic symptoms, and utilise that knowledge to help new and continuing patients with Coeliac Disease. I argue that a study of these Big Social Data practices can reveal to us basic patterns of self-care, that can in themselves be re-imagined as patient knowledge to further help other patients/individuals. I also consider examples where the gamification of health knowledge has helped younger and continuing patients (Khaled, 2014; Hamari, Koivisto & Sarsa, 2014; Phillips, 2016). Finally, I discuss how once such knowledge is visualised and turned into a games-based learning app to help Coeliac patients learn how to practice basic levels of self-care and independence post-diagnosis, it can also be recognised by other social science and medical researchers as contributing to both the social science and gastroenterology literature.
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Turning User Data on Social Media into Gamified Learning Tools
So far in this thesis, research has begun to explore how Coeliacs are using social media, and how they keep visual and status diaries of their practical experience. These individuals are also building knowledge of managing their gluten free diet, from going through the process of diagnosis, learning how to adapt to the gluten free diet, and sharing experiences of the symptoms from being accidentally glutened. Building on the data from Chapter 4, where I look at how Coeliacs expressed different levels of self- care and identity in their pursuit of managing the GFD post diagnosis. Here I explore the concept of using game-based visualisations to relate the care of CD to Coeliacs and others interested in playing health-themed games.Gluten Fighters
I developed the Gluten Fighters game (Martin, 2014c) which is based on the simple games-based principles seen in the literature review. I wanted to see if I could use a fantasy game as a way to illustrate how basic gaming principles like a fantasy world, and role-model character based on a superhero, could help to visualise the practices of the GFD in a way that Coeliacs could engage with (Lieberman, 1997:chap.6). The story in the game focuses on a character called ‘Coeliac Sam’ and her other Coeliac friends who ‘fight’ back against chefs who had promised them that their restaurant food was gluten free and not cross-contaminated, but had instead served them food that had been glutened and made them ill anyway. This game story was an attempt to visualise the scenarios that I had come across in my data from Chapters 4 and 5 in this thesis, where Coeliacs had tweeted or posted on social media about being glutened while eating out, despite being assured that their food was ‘coeliac safe’, and prepared separately. To reflect the frustration felt by Coeliacs, I created a game scenario of what would happen if the Coeliacs in question could take matters into their own hands and ‘bat’ the glutened food back at the chefs who had promised them it was safe for them to eat. This scenario would turn into a rather gentle, but still empathic ‘fight’, where the angry superheroes batted back glutened muffins towards the chefs in question.
Figure 27. Gluten Fighters game and achievement interface
My initial thoughts for designing the character were that Coeliac Sam would be of the pre-teen age group, with general superhero qualities like a cape, and edgy outfit, and that their ethnicity would also reflective of the diversity of people worldwide who are diagnosed with Coeliac Disease. Therefore, the ethnicity of Coeliac Sam is a bi-racial girl of indeterminate race, with green eyes, and with purple hair to match her superhero outfit. This was also based on observations in the literature of calls in recent years for strategies to be developed to help more South Asian and North Indian Coeliac patients in the UK to adhere strictly to the gluten-free diet, where uptake of the Gluten Free Diet is quite low (Holmes & Moor, 2012).
To widen the demographic of who played the game, I also chose to make the character a girl. This reflects analysis of an increase of 35% of girls and women who are playing games on their smartphones (35%) (Rubin, 2007). This also mirrors the increased inclusion of diverse female super- heroines like Wonder Woman and Bat Woman in comics and in today’s market (this is in comparison to the mainly young male audience catered for in the past) (Rubin, 2007).
I finally settled on designing the character of ‘Coeliac Sam’, a pre-teen girl with brown skin, glasses and a cape, whose main role is to go through a fictional world, searching for gluten free food labeled with the official gluten free cross-grain label used by Coeliac UK and other Coeliac organisations around the world. The name “Coeliac Sam” was also chosen to connect to
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my personal experience of living with Coeliac Disease (see Introduction, Chapter 1). Portraying Coeliac Sam as a super heroine was seen as an effective way to potentially portray the positive self-management of Coeliac Disease to Coeliacs. It was hoped that such a perspective would help some Coeliacs perceive themselves as the superheroes of their own guts and immune systems, and that playing such a character would help them feel a little bit better about being proactive in self-care.Within Gluten Fighters, I created 4 levels in the game, that were themed on Dante’s levels of hell (again a reference to the hashtag #glutenhell used by Coeliacs who had accidentally been glutened). Each level of the game becomes harder, with the hardest level meaning that the game player needs to help 4 different superheroes bat back glutened food to four different chefs (e.g. the equivalent of eating out 4 times a day at 4 different food venues, and being glutened at each one). I also utilised classic gaming features like instant feedback, leadership boards, achievement levels discussed by Munson et al. (2014:pp.601–605), with the ability for players to repeat each level of the game and get better with each try, so that by reaching different achievement levels, they would feel more positive about advocating for their own gluten free diets.
Gluten Fighters was launched in August 2014. However, despite marketing it via Twitter, Facebook, blog posts and Instagram, the amount of downloads for the game was small, and the overall impact was very small, with just 100 downloads between 2014 and 2017. While thinking about why users did not seem to be inspired by the game, I went back to Munson et al. and Lieberman’s discussions of using gamification features to promote health-changing behaviour (see the Literature Review for this thesis, Chapter 2). Upon a closer reading, I realised that a key factor that I may have missed was giving potential game players the ability to empathise with a game character at a level that allowed them to go through the basic stages of searching for gluten free food for their diets, and seeing how the symptoms of being accidentally glutened actually affected the superhero they were playing. Going back to Leiberman, I realised that Gluten Fighters did not allow Coeliacs to properly empathise with the characters in the game in terms of:
“video games [should] represent appealing role-model characters, [and] provide scenarios that involve making health decisions and carrying out self-care skills, and epic realistic consequences in response to players’ decisions and actions”
(Lieberman, 1997:chap.6)”. (emphasis mine).
In an aim to bring about a more empathetic game, where Coeliacs better identified with the everyday actions of the characters, I returned to my data with regards the experiences of symptoms and selfhood shared by Coeliacs on social media, and crafted a second game featuring Coeliac Sam, that brought out the practising of these health decisions and self-care skills, and the consequences of being glutened in a more pronounced way. By keeping Coeliac Sam a superhero of her gut, but making the game more interactive, it was hoped to empower Coeliacs and younger children into feeling they could have a positive role of being ultimately responsible for looking after their own gut health.
Coeliac Sam: Learning Basic Gluten Free Diet Concepts with
Games
The creation of the second gaming app, and thus the new ‘Coeliac Sam’ game (Martin, 2014b) was to see how I could further utilise the initial results of the social network analysis of how Coeliacs shared patterns of self-care, but this time visualise the concept of searching for food to manage the GFD in a more interactive way. In this way, I brought active pursuit of the GFD into the foreground, while keeping game interface components like health points and leaderboards within the background of game. The creation of Coeliac Sam that focused more on actions of self-care was also an experimental exercise in seeing if a games character could be re-imagined with the task of engaging in Foucauldian acts of self-care, self-government and responsibility for chronic illnesses like Coeliac Disease.
As noted already, in terms of acts of the self-care of illness, Foucault argues that individuals in society moderate or self-govern themselves as subjects of consumerism through what he labels the practices or technologies of the self (Foucault, 1988). For Coeliacs, the need to access
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and buy gluten free food so that they can manage their life-long gluten free diet, means that their roles as consumers, and their reliance on external sources for this food is at the forefront of their practice of self-care. By creating a games character, whose sole aim is to find safe gluten free food to self-manage her health, it was hoped to re-imagine this Foucauldian concept of self-care, and responsibility for the ill self.By giving the character the identity of someone with Coeliac Disease, I also aimed to visualise Gibbons and Rose’s concept of Biosocial Citizenship (2007). In terms of being a ‘Biosocial Citizen’, by her name alone, “Coeliac Sam” can be identified as belong to the biological group of people with Coeliac Disease. Her attempts at trying to stay healthy by finding safe gluten free food in a world where the majority of food has gluten in it, also makes her a part of the social and cultural experience of Coeliacs experiencing the same issues.
Within the game, as Coeliac Sam goes around collecting gluten free muffins, she also collects ‘health points’ as her gut grows stronger (Figure 31). The adversaries that make up the world of superheroes are here in the form of ‘monster’ cupcakes and pizza slices that are filled with gluten, and have small teeth that gnaw away at the Coeliac small intestine/gut when Coeliac Sam comes into contact with them. My design of these adversaries was based on Coeliacs tweets discussing how they managed the biographical disruption that they experienced when first having to go on the GFD after a lifetime of eating gluten and wheat, and how they coped with being tempted by gluten-filled cakes and pizza when hungry, and calling them’ #glutenmonsters’ that would cause them pain (Figure 30). This expression of reimagining the food that they once loved as monsters that would harm their health, was a reflection of previous qualitative studies in the literature that questioned how newly diagnosed Coeliacs coped after diagnosis, and got a similar response (Rose & Howard, 2014a; Hobday, Law & Howard, 2015). I aimed to answer my research question by using games mechanics and the visualisation of quantitative data to express these findings, and disseminate them to see if Coeliacs or those interested in gut-related diseases would engage with this mode of gamification.
Figure 28. ‘Gluten Monsters’ (#Glutenmonster) mentioned in Coeliac Twitter corpus
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Figure 30. Hashtag analysis of Coeliac SymptomsFigure 31. Coeliac Sam: Super Fruit power-ups: remedies for being glutened
Figure 33. Coeliac Sam Review/Feedback
Drawing on social network analysis from the Twitter corpus evaluated in Chapter 4, I visualised how Coeliac Sam would experience the symptoms of being glutened. Here, I looked at the top 10 words that Coeliacs used to described how they felt when glutened, these were mainly words to describe fatigue and a lack of energy. In this regard, I programmed animation into the game, so that whenever Coeliac Sam touches a gluten- filled pizza or muffin, she seems to visually fade away and flash in and out of focus on the screen until she touches a resource that helps her gain back her strength (Figure 34).
In terms of recovering from being glutened, I again drew on analysis from my Twitter and Instagram corpus, where several users (55% of 40,000 Instagram posts, and 65% of 75% Tweets in between May 2013 – 2014), reported resorting to healthy fruit and smoothie remedies, and fruit flavoured yoghurts that contained probiotics to help their guts heal after being glutened. To reflect this, I introduced ‘super fruit power-ups’ in the form of ‘super strawberries’ into the game, so that any time Coeliac Sam’s energy becomes low after being glutened, these ‘super strawberries’ give her some extra time to heal (Figure 33).
Each time Coeliac Sam digests too much gluten she ‘crashes’, and the ‘game over’ screen pops up, giving the user a run-down of the number of ‘health points’ and gluten free food she’s accumulated. It also gives a continuous count of the highest score the player achieves throughout the life of the game as it exists on the user’s phone. This was a subtle way of
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keeping a continuous count of progress made in Coeliac Sam’s gluten free diet, which is as continuous as the life-long gluten free diet followed by Coeliacs (Figure 34). The decision was made to briefly explain the thinking behind these visualisations and animations in the game in the description of the app in the App stores upon release, so that users would understand that the game was aimed at younger users with Coeliac Disease. This was mainly because I wanted to see if users gave feedback that showed they understood the premise of the game, and hopefully that they would share if playing it helped them feel more proactive or empowered about managing their chronic disease.To this end, Coeliac Sam was launched as a free app game in the Health & Lifestyle and Food & Drink categories on the Apple and Google Play and Amazon Play stores for both iOS and Android smartphones in 2014 was launched as a free app game in August 2014, with just over 2000 installs across both iOS and Android phones (between 2014 and 2017). In just over a year, feedback from users showed that they found some positives from playing the game. Although there were no overall negative reviews, this may be because users had not felt inclined to write or send a negative review. Overall ratings of the game across iOS and Android platforms, however, were between 4 and 5 out of 5 stars. One such review was from a British user (reviews are itemised by region in app store analytics), who seemed to immediately identify with the character of Coeliac Sam, and communicated how it felt her feel more positive about her Coeliac Disease (Figure 35). In her review she says: “Yes I'm a coeliac, this app is great fun so us coeliacs [sic] are like Sam! We battle the gluten and collect gluten free stuff at the shop!! Great app and makes me feel not so bad about my coeliac disease So coeliac are superheroes in this app Great app please make more coeliac based games please I love them”. This review shows that Coeliac Sam seems to have been accepted as a Coeliac, as a game- based projection of biosocial citizenship, where her trials and struggles and health point goals are a reflection of those of the players that engage in the game. This was also reflected in reviews on Google Play and Amazon Play stores, where users gave feedback with regard to their view of it as an educational tool about Coeliac Disease and managing the prescribed gluten free lifestyle. As a result of one of these reviews, by a Coeliac who
also blogged about her experience of living with Coeliac Disease, I was also asked to give a short interview for her blog, where she asked me several questions about the research behind the app, and how I hoped people would use the app (Samantha Stein, 2014).
While this was a positive result for an explorative study into gamifying and visualising the concept of the self-care of Coeliac Disease, it was still uncertain what real impact this had on the social science or medical literature in terms of the effectiveness of app solutions in terms of addressing sociological and health problems. Both the Gluten Fighters and the Coeliac Sam app remained in the wilds of the Apple and Google Play app stores, until July 2017, when a commissioning editor for The Lancet contacted me to ask for details to review both apps for the Gastroenterology supplement for their August edition (Zajanckauskaite, 2017). This was a simple review of apps that not only quantified the management of gastroenterological problems, but also visualised these issues in an educational or gamified way.
What was helpful about this short Lancet review was that it looks at the effectiveness of my use of both types of gamification models to visualise the self-care of CD. With Gluten Fighters, it looks at the simple use of game mechanics in terms of instant feedback from the characters in the game knocking back glutened objects at each other. It also recognises that while this is an entertaining way to visualise self-care of CD, it is less interactive and less educational in comparison to how the second Coeliac Sam game gives players a way to learn and understand what it means to have CD and to self-care for the GFD. Zajanckauskaite notes:
“Gluten Fighters is a health-themed educational game app, designed to teach children the basics of coeliac disease. In this prototype app, Coeliac Sam and her friends fight against demon