A CHOICE FOR HEALTH:
AFFORDED BY THE PREDIABETES
APPLICATION
(Changing Mind and Metabolism)
MASTER’S THESIS, NEW MEDIA AND DIGITAL CULTURE
Name: Zoë Versteegen
Student number: 10217215
Title: A Choice for Health: Afforded by the Prediabetes Application. (Changing Mind and Metabolism)
Date of completion: 23 June 2017
Supervisor: Lonneke van der Velden Second reader: Natalia Sanchez
Department of Media Studies, MA New Media and Digital Culture University of Amsterdam
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Special thanks to: my internship supervisor, the development team, the people who tested the
Prediabetes Application and Lonneke van der Velden for her guidance.
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1. ABSTRACT 4 2. INTRODUCTION 5 3. THEORETICAL FRAMEWORK 9 3.1 BIOPOLITICS 93.2 HEALTH CARE HAS TAKEN AN ECONOMIC TURN 11
3.3 FREEDOM AND POSSIBILITY 12
3.4 EHEALTH 13
3.5 CRITIQUE ON EHEALTH 14
4. METHODOLOGY 16
4.1 A STUDY OF HEALTH APPLICATIONS 16
4.2 FRONT-END / INTERFACE 17
4.3 BACK-END / INFRASTRUCTURE 18
4.4 QUALITATIVE INTERVIEWS 19
5. FINDINGS 22
5.1 PRODUCTION PROCESS 22
5.1.1 The project leader 22
5.1.2 Psychologist 23
5.1.3 The app maker 24
5.1.4 The app designer 24
5.1.5 Apple ResearchKit 25 5.2 AFFORDANCES 27 5.2.1 Cognitive affordances 27 5.2.2 Functional affordances 29 5.2.3 Sensory affordances 31 5.3 BACK-END / INFRASTRUCTURE 33 5.3.1 Questionnaire 33
5.3.2 Data privacy and security 35
5.3.3 Where is this data going to and who has access? 35
5.4 ETHNOGRAPHIC EXAMINATION OF USERS 36
6. DISCUSSION 39
6.1 RESPONSIBLE CITIZENS 40
6.2 DATA SURVEILLANCE 41
6.3 HOW TO CONDUCT INTERVIEWS? 43
7. CONCLUSION 45
8. BIOGRAPHY 47
9. APPENDIX 50
9.1 Design first version Prediabetes Application (provided by Innovattic) 50 9.2 Questionnaire (Provided by Innovattic) 56
9.3 Qualitative interviews 57
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1. ABSTRACT
There are many medical health applications on the market and this number is still increasing. These applications can be seen as a reflection of a certain era, where freedom and possibility are the most important engines to govern. This kind of governing can be connected to the concept of ‘biopolitcs’ of Michel Foucault. More and more people are expected to make the right choices on many different areas and people are getting the freedom to do this. Therefore, many tools are offered to manage our own health. To research this phenomenon, I took a closer look at one eHealth application, namely the
Prediabetes Application which is developed by the Leids Universitair Medisch Centrum (LUMC).
Because of my internship there, I also gained insight into the production processes. This research gives an answer to the question: how does the Prediabetes Application afford patient responsibility in the age of a changing health care?
The goal of the application is to give people with prediabetes more knowledge about nutrition by using the glycaemic index (GI). People with prediabetes have a high risk of suffering from diabetes. By developing this application, the development team claims to hand out a tool and make them act responsibly concerning their daily food intake. How can this application be connected to the ‘biopolitical’ age? I have analysed the interface and back-end of the application, but also the
productions process and how the users perceive it. By doing a discursive interface analysis it became clear what the Prediabetes Application affords and what norm it produces. This was also supported by conducting qualitative interviews with the development team of the Prediabetes Application and different kinds of users. The research has shown that the Prediabetes Application is a reflection of the health care in the 21st century. The Prediabetes Application functions as a tool to increase
self-management and make people responsible. But it also causes that new forms of data surveillance and ‘risk thinking’ arrive.
Keywords: Prediabetes Application, eHealth, biopolitics, patient responsibility, affordances, discursive interface analysis, data surveillance, risk thinking.
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2. INTRODUCTION
There are 750.000 people with prediabetes in the Netherlands, which means they have a great chance of suffering from diabetes in the future. It is known that if the patients with prediabetes do not change their lifestyle they have a high risk to develop type 2 diabetes and for which no cure exists at the moment (Diabetesfonds). In the Netherlands, by looking at the numbers we see that 1 in 14 people have diabetes (Diabetesfonds). When suffering from diabetes, the body can no longer keep the blood sugar level in balance. This is a consequence of having too little or no insulin to keep the blood level under control. There are two types of diabetes; type 1 or 2. When having type 1 the body defence is attacking all the cells that are making insulin. Type 2 is mostly genetically determined, but also very much caused by an unhealthy lifestyle. 9 in 10 Dutch diabetes patients have diabetes type 2. The biggest risks of getting diabetes type 2 are when you are obese and have too little body exercise. Having diabetes has serious consequences; it can cause problems with the patients eyes, kidneys, blood vessels and feet. And above all, it can have deadly consequences (Diabetesfonds). If this ‘risk group’ would make their lifestyle healthier, this could be prevented. A problem here is the fact that people with prediabetes do not feel sick and do not feel a need to change their life. The goal is to change their mind-set regarding what is and what is not healthy for them; like eating healthy and getting enough exercise. For this risk group, it is important to reduce carbohydrates rather than, notably, pay attention to their caloric intake. But most of the time people are not able to manage this on their own or to combine it with their daily lives.
Health information and communication technologies are expanding to improve the health and health care. One of the benefits of eHealth technologies is that patients and doctors can communicate with each other on a new level. “Expansion of health information technology and consumer e-health tools—electronic tools and services such as secure e-mail messaging between patients and providers, or mobile health apps—have created new opportunities for individuals to participate actively in monitoring and directing their health and health care.” (Hawn 376). A news article of the NOS on June 2016, discusses the scepticism in the Netherlands about eHealth technologies and questions if eHealth is a hype or a health revolution (Pennarts). However, this article notes that Minister Edith Schippers is very positive about eHealth: “Instead of the patient going to health care I predict that health care will go to the patient”. And state secretary Martin van Rijn says: “Hospital car parking will be empty in the future”. According to the NOS news article, health care entrepreneur Loek Winter predicts that the demand for care will only increase more, because people can measure their health daily. But still the idea is that with these new technologies people can manage their health every day instead of going to the doctor three times a year. EHealth could also be a solution to lower health care costs, but still we have to look out for health care applications that are quackery. Niels Chavannes (professor e-Health,
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LUMC) wants to make sure the useful applications are separated from the ones with empty promises, with help of science research.
According to Prof. N. Chavannes: “EHealth technologies give opportunities for health care; doctors and patients can exchange digital data and they are making patients co-responsible for their health.” (LUMC). One type of many eHealth technologies are eHealth applications. At the moment, many eHealth applications are developed, not only by research departments of a hospital but also by big companies such as Apple. One example of a recent study on eHealth technology is Thuisarts.nl, a website and application that can be used to look up symptoms and receive advice about what next steps a patient should take. It can also be used as a diary for doctors’ appointments and for taking notes during or after a visit. The application is free to download and can be used by everyone with a mobile device. In "Effect of an evidence-based website on healthcare usage: an interrupted time-series study" about the website of Thuisarts.nl, Spoelman et. al. concluded: “Healthcare usage decreased by 12% after providing high-quality evidence-based online health information. These findings show that e-Health can be effective to improve self-management and reduce healthcare usage in times of increasing healthcare costs” (1). Possibly a future is coming where eHealth technologies can increase self-management in the health care.
For the past four months, I have been doing an internship at the Leids Universitair Medisch Centrum (LUMC). The department of First Aid Medicine is developing an eHealth application for patients with a high risk of suffering from diabetes; prediabetes. This project is led by my internship supervisor; she is also called the project leader in this examination. The main goal of the Prediabetes Application is to make people with prediabetes more conscious and let them gain more knowledge about the impact of nutrition on their health: the ‘changing mind and metabolism’ application. Therefore, the application focuses on the reduction of (fast) carbohydrates by ranking the products based on their glycaemic index or glycaemic load. This categorization of products by the GI (glycaemic index) shows how fast a product raises the blood sugar level and therefore is the best measurement for people with
prediabetes. This way of preventing the risk of diabetes by looking at the GI is based on relatively new studies (Foster-Powell et al. 5).
During my internship, I helped by making the list of products based on the glycaemic index, which is the basis of the application. The aim of the application is to give the people that are suffering from prediabetes a tool and make them co-responsible for their health by giving them more knowledge. In return for my internship, I received a lot of information about their motivations and about the
Prediabetes Application. As Bent Flyvbjerg states in “Five Misunderstandings About Case-Study
Research”, the first misunderstanding is that theoretical knowledge is more valuable than practical knowledge while studying a case (224). By doing this internship I was able to gain theoretical and
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practical knowledge while working on my case-study; the Prediabetes Application, which has contributed to my research. According to Finlay: “Through the use of reflexivity, subjectivity in research can be transformed from a problem to an opportunity” (531). By analysing the Prediabetes
Application from the theory and methods I am reflecting self-consciously on how the application aims
to affords co-responsibility. This research has not been executed for my internship, though I received information and gained practical knowledge. Therefore, the problem of subjectivity is made into an opportunity.
Since the 18th century it became the responsibility of the government to control the management of life
and therefore care for the well-being of the population. And this is called ‘biopolitics’ (Rose 1). In the 21st century new technologies are indispensable tools for political authorities to manage these politics of life. Practices of power relations from below, like the practices of researchers, psychologists, doctors and medical companies act upon society to be responsible citizens by using eHealth. It becomes clear, to prevent the risk of diabetes in society, people must be co-responsible for their health. Health care is moving away from the professionals, into the hands of the patients. To manage this, technologies must be used to make health and well-being measurable. In “Apps as Artefacts: Towards a Critical Perspective on Mobile Health and Medical Apps” Deborah Lupton states: “Technologies such as health and medical apps represent the vagaries of human embodiment as amenable to control if sufficient vigilance and self-responsibility are exercised” (615). When data about health and well-being is collected, the health of society can still be measured by these medical applications from a distance. Because people have a choice to use these technologies, freedom and opportunity is given to manage their own health and act like responsible citizens, which leads to more control. Therefore, more research about these technologies should be done: “We know very few details about how health professionals such as medical practitioners, hospital administrators, public health professionals and health promoters are incorporating apps and associated mobile digital
technologies into their work practices” (Lupton 618). By doing my internship at the LUMC, during the development of the Prediabetes Application I hope to contribute to more research on eHealth
applications.
The main question is: How does the Prediabetes Application afford patient responsibility in the age of a changing health care? To answer this question, I first looked from the perspective of ‘biopolitics’. The concept ‘biopolitics’, first introduced by Michel Foucault, means that society can be governed from the level of life itself. These techniques give people more responsibility over their lives by having a desire for a more happy and wealthy life. Hereby, their thoughts and ideas played an
important role in the political body. An economic shift has taken place in the health care industry, that is in line with the techniques of biopolitics. The responsibility is shifting towards the patients and taken away from the health care professionals. To see how the Prediabetes Application is connected to
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this changing health care I looked at the ‘affordances’. By doing a discursive interface analysis I have analysed what the application affords, or others to see what the functions and design of the application allows the users to do. In "The Interface as Discourse: The Production of Norms Through Web Design" Mell Stanfill states that an interface becomes a productive power by making something more possible, normative, or ‘common sense’ (Stanfill 1060). By looking at the ‘affordances’ of the
Prediabetes Application it is possible to expose the normative claim the interface is making.
According to Bucher and Helmond, when ‘good’ affordances are designed, the user knows how to act (7).
Thirdly, after analysing the ‘affordances’ I did an ethnographic examination of the development team to expose what norm is produced by them. Stanfill states: “Future work might productively combine discursive interface analysis with ethnographic examination of site visitors themselves or industry workers and their production processes in order to enrich the understanding of how interfaces reflect cultural common sense and produce norms” (1071). Therefore, I have conducted four qualitative interviews with the development team of the Prediabetes Application to see their motivations and how they work to fulfil these goals. It is important to know how they think about patient responsibility and a changing health care. Also, I asked them questions about data collection and privacy, concerning the
Prediabetes Application, to find out what data is collected and what it is being used for. When looking
at the practices of power relations, it is important to look at the consequences of data surveillance. Next to the interviews with the developers, I have tested the application on five users to see how the affordances are received. In this research, it became visible how the Prediabetes Application operates in time of patient responsibility, how this power is produced and what consequences it can have on society.
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3. THEORETICAL FRAMEWORK
In “Apps as Artefacts: Towards a Critical Perspective on Mobile Health and Medical Apps” Deborah Lupton states that people must be critical towards the arrival of these eHealth applications. Lupton says health care is digitizing and they claim to give patients ‘control’ over their health by engaging in self-monitoring and self-care using these digital technologies (608). There are many medical
applications on the market, some produced with real medical expertise and some are made by a commercial company, because any developer can produce such an application (Lupton 609). For my research, I am taking a closer look at the claim these applications are making: to give people the opportunity to ‘take control’ over their own health. To explain how patient responsibility becomes normative it is first needed to look at bigger regimes of power and knowledge. “As much as Foucault characterized his own project as studying [...] the different modes by which, in our culture, human beings are made subjects, this process has always intersected with regimes of power/knowledge” (Read 26). This means that how society is governed is connected to different kinds of techniques that have changed over years. So, how is the Prediabetes Application connected to these power/knowledge regimes? From the perspective of biopolitics the Prediabetes Application claims to give patients more knowledge and therefore responsibility. In my theoretical framework, I will first explain what
biopolitics is and how it has evolved over time. Secondly, how the Prediabetes Application can be connected to a changing health care of the 21st century. Last, I will discuss some critique on eHealth applications concerning data surveillance and solutionism.
3.1 BIOPOLITICS
In The History of Sexuality an Introduction Volume 1, Michel Foucault is the first to introduce the concept of biopolitics. In chapter five: “Right of Death and Power over Life”, he explains how the right over life and death could be used to exercise power. Since the classical age, a shift in the West became visible whereby sovereign powers no longer focused on ‘deduction’; a right of seizure and even of life. But Foucault noticed a new form to reign; […] “the right of the social body to ensure, maintain or develop its life” (136), became most important to exercise power. Death was not only a punishment anymore, but also a manner to motivate the population to be stronger and escape from it. But still, many bloody wars and holocausts were a contradiction to this right to improve life. The population must learn to fight in war, which results in a ‘survival of the fittest’ were only the best version of the species and race will remain. Foucault noticed a shift that was still depending on the right of life and death: “One might say that the ancient right to take life or let live was replaced by a power to foster life or disallow it to the point of death” (Foucault 138). From this can be concluded that death remained the most powerful way to control society.
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From the 17th century the task of administering life became a responsibility of the political body.
Society was no longer ruled by the power to kill, but to manage and improve life of the population (Foucault 139). According to Foucault, this kind of new power was operating in two ways, first via the
disciplines of the body and second via regulatory controls: a biopolitics of the population (139). The
concept of disciplines of the body, is exercised through institutions such as the schools, factories, prisons and hospitals that can measure and observe political practices, like birth-rate, public health, housing and migration. This kind of power occurred on the level of life itself, where a discourse; a certain kind of thinking, is imposed on the population via their own environment.Regulatory controls were visible in contracts and tables and these technologies made it possible to evaluate and measure the population. The body of disciplines together with the regulatory controls can be seen as the beginning of bio-power (140). The most important engine for governments became the management of life (biopolitics) and is made possible by the techniques of bio-power as discussed before, that are designed to control the health of the population.
Bio-power was also very important for the development of capitalism. When the quality and wealth of lives improved, society consumed more products and this helped for an expanding economy. People in the West started to notice what it is like to live a free, prosperous life. Foucault noticed that power was now exercised through the level of life itself and no longer through death (143). People had the right to live a healthy, happy and wealthy life and this became the norm for the social body of society, as well as the political body. According to Foucault, because of these techniques of biopolitics sexuality became a part of people’s individuality (146). Thinking about sex could be a distraction for work and life and therefore a disadvantage for a capitalist economy where work and consumption are the most important (Shumway 151). At this moment, also governments started to push this by spreading ideological campaigns to increase responsibility among society and regulate the population (Foucault 146). For example, […] “the hysterization of women, which involved a thorough medicalization of their bodies and their sex, was carried out in the name of the responsibility they owed to the health of their children, the solidity of the family institution, and the safeguarding of society” (Foucault 146-147). Apart from the fact that people were offered a certain freedom, sex is something that must be repressed and kept as a secret for the overall good of the population. Therefore, control of the government increased and biopolitics made it possible to measure the bodies of the population. Foucault argues that society is ruled from the discourse of sexuality, the discourse where power and sex meet. It is the discourse of sexuality, that tells us who we are and how we should live (Foucault 155). From the 18th century the state wanted to control the issue of sex and therefore institutions and
strategies were deployed (Foucault 30). These institutions can be educators, physicians, doctors, parents et cetera and give them knowledge to enclose them in a certain way of thinking. Before these new institutions, in Catholic countries the ‘pastoral’ power controlled the discourse of sexuality by
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letting people for example make confessions (Foucault 19). According to Foucault: “[…] because it tried to impose meticulous rules of self-examination; but above all, because it attributed more and more importance in penance – and perhaps at the expense of some other sins – to all the insinuations of the flesh: thoughts, desires, voluptuous imaginings, delectations, combined movements of the body and the soul; henceforth all this had to enter, in detail, into the process of confession and guidance” (19). By making confessions people had a listening ear and got help with their personal issues and individuality that did not meet the norm of society. Pastoral power can therefore be compared with guidance, because it guides individuals by self-examination to be a part of the collective society. This pastoral power that once belonged to the church, became an important part of biopolitics which can be traced back to the disciplinary institutions. According to Foucault: “It is the agency of sex that we must break away from, if we aim - through a tactical reversal of the various mechanisms of sexuality – to counter the grips of power with the claims of bodies, pleasures, and knowledge, in their multiplicity and their possibility of resistance” (157). Foucault suggests society should use these powers of
knowledge and pleasure in their own advantage and have the possibility to get into resistance.
3.2 HEALTH CARE HAS TAKEN AN ECONOMIC TURN
Nikolas Rose analyses how human life itself has become the object, target and stage for a ‘new’ vital politics in his work The Politics of Life (1). Central in his work is the concept ‘biopolitics’ by Michel Foucault as addressed before in this research. In this biopolitical age, government rules society by taking the responsibility over the management of life, instead of the right of death. This power works from below, through the level of life itself. Different kinds of institutions like hospitals, schools and family form a network of power relations, that set a discourse. According to Rose: “Political
authorities, in alliance with many others, have taken on the task of the management of life in the name of the well-being of the population as a vital order and of each of its living subjects” (Rose 1). In the next part, I will explain how biopolitics is also connected to the health care industry.
The care for a healthy population is not necessary for the national position compared with other countries, but has taken an economic turn. In the 20th century we see a development of health-promotion strategies in line with health insurance industry and therefore individuals became responsible for their own health. “Every citizen must now become an active partner in the drive for health, accepting their responsibility for securing their own well-being” (6 Rose). Society hereby received a feeling of freedom, but within this network of health insurance companies, doctors, communities etc. they were controlled by the government; the government of health (Rose 6). Individuals are influenced by this network and are motivated to improve for example their lifestyle. This government of health is not ruled for the overall fitness of the population, but: “Rather, it consists of a variety of strategies that try to identify, treat, manage or administer those individuals, groups or localities where risk is seen to be high” (Rose 7). This kind of governing that has been central to
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biopolitics for about 150 years is called ‘risk thinking’ or ‘risk management’ (Rose 7). By using an algorithm, the government could develop all kinds of risk profiles, like in terms of age, weight, family history, smoking and so forth (Rose 8). After being profiled they could be advised to change their behaviour, by following a diet, creating a new lifestyle or take drugs to prevent getting actually sick. With the arrival of the health insurance industry people were made responsible for their own health and consequently health care became a profitable industry.
3.3 FREEDOM AND POSSIBILITY
In the 19th and 20th-century, health was shed in the light of personal aspirations of health and
therefore it was also said that biopolitics was democratized in this period (Rose 17). In the second half of the 20th century, this idea of health changed; it was no longer only about avoiding sickness, but also about the overall well-being, like beauty, success, happiness, sexuality etc. (Rose 17). Therefore, advertising and marketing also became a part of the health industry. Thoughts and ideas for work on the self, changes the perspective of health in society.
“By the start of the 21st century, hopes, fears, decisions and life-routines shaped in terms of the risks and possibilities in corporeal and biological existence had come to supplant almost all others as organizing principles of a life of prudence, responsibility and choice" (Rose 18). Experimenting with the vital of the self is called ‘somantic individuality’ according to Rose and because of this new values are created about who we actually are (18). Rose links biopolitics to his own term ‘ethopolitics’: “[...] the politics of life itself and how it should be lived. Ethnopolitics is most importantly about the ‘quality of life’ and how this can and should be improved: “If discipline individualized and normalized, and bio-power collectivizes and socializes, ethnopolitics concerns itself with the self-techniques by which human beings should judge themselves and act upon themselves to make themselves better than they are” (Rose 18). In this kind of politics, individuals are the key actors and their biological identity is connected to self-actualizing and responsible personhood (Rose 18). According to Foucault, medical thought has always been fully engaged in the ethical question of how we should live (Rose 20). This politics of life itself is connected with the practices of many power relations; techniques, doctors, genetic counsellors, research scientists, drug companies, but also our environments of friends and family (Rose 22). Based on these relations people make judgments about the quality of our lives and based on these practices decisions about changing your life are made. Then, for the “good” of our biological life society is given choice and therefore freedom and
possibilities. To make the right choices society needs the right tools to get more knowledge about how they should live. From the perspective of biopolitics, people are using these tools to become a better self. Therefore, in the next part I will more deeply explain this relation between biopolitics and eHealth.
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3.4 EHEALTH
Users give meaning to eHealth technologies when they use them in their everyday lives (Lupton,
M-health and Health Promotion 232). Therefore, these practices have become even more personal by
monitoring habits and behaviour of society with these technologies. As Arjana states: “Within the framework of biopolitics, control begins with the self itself, controlling its abilities, performance and productivity” (5). Before the arrival of these technologies doctors had the responsibility to monitor their patients. M-Health (mobile health), as Deborah Lupton calls it in “M-health and Health Promotion: The Digital Cyborg and Surveillance Society”, extends the temporal nature of health surveillance (234). With mobile devices, this responsibility of the doctor is a replaced, and medical data can be collected from any place. Lupton calls this flow of medical data a continual loop, because by collecting this data users also receive responds in the form of feedback or information (237). This continual dataflow encourages our will to gain knowledge and work on the self and well-being.
M-Health technologies can collect data flows from everywhere, but still these technologies are far ‘decorporealised’ (Lupton, M-health and Health Promotion 237). As discussed above habits of users are monitored by these m-Health technologies and users receive information and feedback in return. Therefore, these technologies are not ‘decorporealised’, because they claim to give users more
knowledge about their body and self. Users receive information into their intimate and personal spaces to let them act in a certain way (Lupton 238). As a consequence, users of these m-Health technologies are made more responsible for their own health. Still it is the question asks Lupton herself: “Will the ‘nagging voices’ of the health-promoting messages automatically issuing forth from a person’s mobile device be eventually ignored by its user? Or will these messages incite even greater feelings of guilt and shame at one’s lack of self-control and self-discipline?” (M-health and Health Promotion 242). These questions about how a medical application could be received by its users, is interesting when researching the Prediabetes Application.
By discussing biopolitics and the economic turn of the health care, how can this be connected to eHealth applications? According to Rose, nowadays many (bio)technologies can help people change who they need to be or how they should live their life (1). For example, surgery, diets, but in this case the focus lies on eHealth technologies. These m-Health (mobile health) technologies give users knowledge of life and body by monitoring and measuring medical data. By the use of these tools, society is offered freedom and possibility to change their health and be responsible. These tools are produced by the practices of doctors, researchers, drug companies, but also companies with little medical expertise. According to Arjana: “And in economic terms, measuring the body has always been a profitable industry” (3). Arjana also argues that because of an increase of users of eHealth
technologies manufactures made more profit (3). This is in line with the economical turn of the healthcare in the 20th century, when the health insurance companies made society responsible for their
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own health. Therefore, it is important to understand who has control over these eHealth technologies and what consequences is has for society.
3.5 CRITIQUE ON EHEALTH
According to Lupton m-health gives people more responsibility: [...] “people as willing to take on responsibility for promoting their health using these latest technologies, to the point that they are happy to receive regular messages on their smartphone or to have their health habits and behaviours continuously monitored and assessed” (M-health and Health Promotion 239). People are getting used to receiving messages in the form of personalized feedback and constantly monitoring their health. Therefore, m-health technologies make it seem like people are willing to take the responsibility for their health. The responsibility is shifting from the health care professionals to the patient and this shift is made possible by m-health devices. According to Lupton this conforms the ideal responsible citizen in neoliberalism, who acts from freedom and possibility (M-health and Health Promotion 239). Again, this has resulted in the fact that health care has made a new economic turn. M-health puts people into ‘risk groups’ and targets them as consumers. Lupton states: “The use of m-health in health promotion extends the temporal nature of health surveillance, and allows for further refinements of the
categorising and identifying of ‘risk factors’ and ‘at-risk groups’ that are then deemed eligible for targeting” (M-health and Health Promotion 234). By the use of these technologies users can be chased to consume health related products or other devices, and act like a responsible personhood. People become responsible when they are capable to manage their own health by monitoring and measuring of their body and self.
Secondly, eHealth technologies can not only place people into ‘risk groups’, but they also focus at the individual. According to Rose: “Now it seems that ‘smart’ programmes of pre-emptive intervention can be devised that target only those individuals predisposed to a particular condition” (12). With technologies and algorithms, the government can predict the risk of developing a disease. Rose gives the example of screening pregnant women in ‘high risk’ groups since the 1970s (12). Rose is critical about the fact that this chance of getting a disease is not for sure. As discussed before: “In this space, biopolitics becomes ethnopolitics”, where the ‘quality of life’ becomes central (Rose 12). But the calculation of risk can yet not be made by technologies, thus some decisions should still be in the hands of doctors. The quality of life depends on more factors then the algorithmic calculations these technologies produce by collecting data.
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In To Save Everything, Click Here, The Folly of Technological Solutionism Evgeny Morozov claims that new technologies often are a way to solve many problems, which he calls ‘solutionism’. Morozov takes Silicon Valley as the example of ‘trying to improve everything’ with new technologies, among politics, citizens, publishing and cooking (5). Instead of looking at the problem these technologies are a short time solution without solving anything. This does not have many positive effects according to Morozov: “New, smarter technologies make it possible to finally position, as it were, the cookery book’s instruction outside the tradition; almost no knowledge is required to cook with their help” (11). In this case, such an application is not making us any smarter but still manages to teach us how we can cook. Morozov gives the example of a health-related game called Fatworld, which asks your weight and health conditions and predispositions you toward diseases like diabetes, heart problems or
overeating (335). Afterwards you can decide how much you need to exercise and what you should eat. But you also create a character that can design menus for your own restaurant. The developer of the game, Ian Bogost says: “The game’s goal is not to tell people what to eat or how to exercises, but to demonstrate the complex, interwoven relationships between nutrition and factors like budgets, the physical world, subsidies, and regulations” (qtd. in Morozov 335). Still Morozov concludes that unless this game illustrates the complex problem of obesity, still it cannot be solved through personal
responsibility (335). It could help people to lose some pounds, but it will not solve the problem of obesity. This phenomenon is what Morozov calls solutionism; a need to improve everything instead of really solving a problem.
According to Morozov: “Occasionally, it’s difficult to draw sharp distinctions between adherents of the Quantified Self and proponents of gamification” (299). The Quantified Self movement is about self-tracking via mobile devices and this should encourage users to be responsible over their health. To what extend can gamification be used in this perspective? Tim Chang, director of a venture capital firm, is exploring gamification with a focus on health care (Morozov 300). Chang says: “You almost need to ‘trick’ the masses into being healthy, and gamification is a great way to do this” (Morozov 300). But in the end, life cannot always be a game and people have duties and obligations (Morozov 300). Health must be able to fit in one’s life and must be a realistic goal. Though, many smartphones offer applications for self-diagnosis, that can be used for improving one’s health by capturing health data (Morozov 241). These applications can already measure many data, like blood pressure, temperature, heart rate and more. But still Morozov is worried about the negative consequences this kind of applications can have: “The next step will be to get insurance companies to see this data and reward the healthy self-trackers and punish everyone else” (Morozov 241). After discussing the critiques on eHealth technologies, it becomes clear that the privacy and data collection must also be held for account when researching the Prediabetes Application.
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4. METHODOLOGY
4.1 A STUDY OF HEALTH APPLICATIONS
Many studies on health applications have been done in the past. In the next two studies about asthma and diabetes applications, similarities can be found with the study of the Prediabetes Application, but also how my study must be done differently. In the next part this is shortly discussed.
In “Asthma on the Move: How Mobile Apps Remediate Risk for Disease Management”, Alison Kenner is also looking at mobile health, but in her case, she focuses on applications for patients with asthma. This disease has a strong relationship between the biological body and the environment of a patient (Kenner 512). “[...] Those who suffer from the condition manage symptoms using a variety of biomedical and environmental control practices that I refer to as emplaced care” (Kenner 511). The applications Kenner is looking at mostly focus on prevention of asthma getting worse by
environmental control and therefore create new modes of risk management (511). As became visible at the Prediabetes Application, people need to change their lifestyle to control their risk of having diabetes. Therefore, the most important part of the application is to make the individuals responsible and provide them with the opportunity to gain more knowledge. Other than Kenner, I will only focus my research on the Prediabetes Application, including the production process of the application. In “Mobile Applications for Diabetes Self-Management: Status and Potential” El-Gayar, Omar, et al. also research the self-management of diabetes applications, in a comparable manner as Kenner. They also looked at all the applications based on AAS (as a representative of commercially available applications) and selected these applications based on inclusion and exclusion criteria (El-Gayar, Omar, et al. 248). One of their inclusion criteria, for example, was the support for blood glucose monitoring (El-Gayar, Omar, et al. 248). In this research, they discovered the limitations and supports of the features of applications for patients with prediabetes and they made an interesting connection between diabetes applications and the tasks of self-management. But for my research it is also important to look at the design of the application and not only at the features. “Individuals make choices not in a social vacuum, but in a context in which certain kinds of subjects and bodies are privileged over others and there are obligations and commitments involved: the responsible, self-disciplined body/self, for example, who is interested in and motivated to improve their health" (Lupton, M-health and Health Promotion 240). There are more factors at stake of how these applications operate. The applications for diabetes and how patients use them is among others also connected to the interface as I will discuss in the next part of my methodology.
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4.2 FRONT-END / INTERFACE
To answer my question, I have researched how the Prediabetes Application structures the kind of thinking that is normative by looking at the interface of the application. In the theoretical framework, it has become clear that for increasing of self-management people must gain more knowledge and responsibility, so the application must act like guidance. It became visible how biopolitics is managing the lives in society, for example by the use of technologies. “‘Biopolitics’ is the name he (Michel Foucault) gives to the mechanisms, techniques, technologies and rationalities that are put at work for the purpose of managing life and the living, and governing their (the population) everyday affairs” (qtd. in Arjana 5). The main goal of the Prediabetes Application is to change the mind of people with prediabetes about their food consumption and therefore also their lifestyle. The interface functions between the user and the system behind it, and this is what the user gets to see. According to Bolter and Gromala: “The most visible, and in some ways the most important, part of any digital application is its interface—the face that the application presents to its users” (11). The possibilities and resistance that is created by the digital design are dependent on the strength of the interface (Bolter and Gromala 11). For eHealth applications to reach their goal and to change the lifestyle of individuals is therefore dependent on a good design of the interface.
For analysing the interface, I looked at the affordances of the Prediabetes Application. But what does ‘affordances’ mean and where does this term come from? In “The Affordances of Social Media Platforms” Bucher and Helmond give a clear explanation of ‘affordances’. According to Gibson, it means how people receive the environment through affordances and therefore control their behaviour (qtd. in Bucher and Helmond 4-5). “Fire, for example, affords warmth, illumination, and cooking, but at the same time it may also afford injury to the skin” (Bucher and Helmond 4). So, through
affordances people know how to handle certain objects. Norman adds to this concept of affordances that they must be received before action is possible and sometimes the affordances are not visible yet (qtd. in Bucher and Helmond 6). “This notion of perceived affordances has been hugely influential in professional user experience design and interface design, within the digital media and tech industries where Norman’s framework still serves as the working definition of affordance” (Bucher and Helmond 6). A good design of an interface can set rules and make users behave in a certain way (Bucher and Helmond 7). And therefore, when having a design with the right affordances designers can stir people in a direction.
How can these affordances of an interface be analysed? Stanfill suggests to look at discourses to expose productive powers in design (1061). A discourse shows a certain manner of thinking amongst a group or period. This concept can be used for the analysis of affordances in many kinds of interfaces. According to Stanfill: “Discursive interface analysis takes sites’ affordances as such a general
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do), producing the possible and normative rather than acting on any particular individual" (1061). Stanfill uses the discursive interface analysis to explain how domesticating fandom on sites is made normative (1065).1 The interface can also be a dashboard, application et cetera; if it functions as the
face of the object and hides the back-end of a technology. Also, applications are products of human-decision making, and therefore tight to assumptions, norms and discourses. (Lupton, Apps as Artefacts 607). Through ‘affordances’ a normative claim about what the user should do by interacting with this interface is produced (Stanfill 1062). Therefore, certain knowledge is made into the design of the interface about what is true or correct (Stanfill 1061). It is not enough to look only at the features, because there are three kinds of affordances; functional, cognitive and sensory (Stanfill 1063). I started a study into the cognitive affordances; how the user knows what to do. Though the use of imperative verbs, labelling of sections (functions), but also interpellation; to who speaks the interface? The notion of interpellation; which means that users can feel the awareness that something is intended for them. Stanfill illustrates this by giving the example of gender; are men or women addressed in a certain interface? (1064). After analyzing these cognitive affordances, I looked at what the user can actually do, in other words, the functional affordances. The functional affordances are the actual features that the application offers. According to Stanfill, from the functional affordances can be told if the users are active or passive and if gamification is used (1066).
The last affordances I analysed are sensory; what the user can sense (seeing, hearing, feeling) (Stanfill 1063). This can be understood as font size, colours, motion, sound, but also the placement of certain sections. Appearing at the top or left makes something more visible, according to newspaper terminology (Stanfill 1064). The sensory affordances can also be called an aesthetic analysis of interfaces, where it is interesting for example to look at colourful adds that draw our attention (Stanfill 1064). Also in health promoting the body is commodified: “Here again, therefore, health promotion can be seen to be taking the lead from commercial enterprises, which are directed at marking and selling commodities” (Lupton, M-health and Health Promotion 231). How will these sensory affordances in diabetes applications speak to its users, will they be simple and quiet or shout to draw attention (for financial reasons)? By doing a discursive interface analysis I examined what kind of norm is produced in the Prediabetes Application.
4.3 BACK-END / INFRASTRUCTURE
The interface as discussed before is visible for users and tells them what to do with it. This can also be called the front-end. In counterpart of the front-end is the back-end, which is not made visible for the users. The back-end is a part of the infrastructure that extends its affordances beyond the environment
1
Domesticating fandom means that fans are a preferred audience for this new media industry, because they are already early adopters of new media (Stanfill 1065). The norm that these sites produces is therefore even more important and can be exposed by a discursive interface analysis.
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that is visible for the user (Bucher and Helmond 30). Bucher and Helmond made this clear concerning social media platforms: “Thus, a platform-sensitive approach to affordances should consider how a platform’s infrastructure extends its affordances beyond its own environment and how they may be integrated in other platforms and services as well as how these activities afford back to the platform and its multiple users” (Bucher and Helmond 30). The infrastructure behind the front-end can export data flows to different kinds of databases, which in some cases fits underlying business models (Bucher and Helmond 19). By analysing the back-end of the Prediabetes Application I examined what kind of data, how this data is collected and where this data is going. After doing this, privacy and data surveillance concerns could be discussed. Questions like, is it affecting people when they are put into risk groups as discussed by Rose, or is the data used for commercially targeting them, could be answered from this.
4.4 QUALITATIVE INTERVIEWS
I have conducted four qualitative interviews with the development team of the Prediabetes
Application and five interviews with users of the application. Because of my internship at the LUMC,
I can easily get in contact with these people. They are making the decisions of how the application is going to operate and produce norms, and therefore it is interesting to follow this process. Also, Stanfill suggests combining interface analysis with ethnographic examinations of industry workers and their production processes to get an ever better understanding of how interfaces operate (1071). Also by doing an ethnographic examination of users, it can be analysed how the affordances are perceived. In Qualitative Research Methods for Media Studies Bonnie S. Brenner argues that respondents can be seen as the important meaning-makers in the construction of the application, rather than “passive conduits for retrieving information” (28). The four interviewees are indeed the meaning-makers of the
Prediabetes Application, with their visions and perspective of how the application must be. For
conducting interviews it is necessary to interview as many people as possible, to gain insights until you have the feeling you know the topic thoroughly (Brenner 30). During the development of the
Prediabetes Application, there are only four people closely involved, hence the number of
interviewees will not be very big. However, these four people carry the full responsibility of the process and their knowledge will be enough that gather complete information about the Prediabetes
Application. Moreover, these four people have different perspectives, because of their backgrounds in
research, psychology, technical background and front-end design, it led to more diverse information. For the ethnographic examination of the users, I have found five participants who wanted to test the
Prediabetes Application. According to Flyvbjerg, it is incorrect to think that one single case cannot be
enough to generalize, though it depends on the case and how it is chosen (225). These interviews must give qualitative information and do not focus on quantitative amount of this information. I wanted to
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see how the first version of the Prediabetes Applications is perceived by people who could use it or could use it in their profession. Therefore, I have chosen to interview five people with different backgrounds. All the participants are in some way connected to the application, for example by their profession or because of a disease they are suffering from. Their opinions are therefore even more interesting and helpful. In the next part I will more closely discuss who the participants are. 4.4.1 Participants
My first interview was with a researcher at the LUMC and she is also the project leader of the
Prediabetes Application. After her, I interviewed a psychologist who is also closely involved in this
project. Third, was a technical developer from Innovattic, the company that is hired for making the
Prediabetes Application, which I called the app maker. And last, was the one who designed the
application and also works for Innovattic; the app designer. These four people form a multidisciplinary team, who are the most involved in the development of the Prediabetes Application and therefore interesting to interview for my research. Next to the ethnographic examination of the development team, I have also examined the interface by testing the first version. Therefore, I have interviewed a graphic designer, diabetes patient type 1, diabetes patient type 2, a general practitioner and a dietician accompanied by her intern.
4.4.2 Data collection
For conducting these four qualitative interviews I made a topic list and this resulted in approximately twenty open-ended questions. The theme of the interviews is about the ‘quality of life’, as addressed by Nikolas Rose in Politics of Life. He suggests that power in society comes from below, and is produced by people and communities around as like, doctors, researchers et cetera (Rose 9). The development team I have interviewed is also a part of these power relations according to Rose. These themes are also interesting within privacy and surveillance questions. Lupton asks herself the
following questions: “How will privacy (or loss of privacy) be defined and experienced in the context of these media? What are the implications for how people conduct their everyday lives and intimate relationships?” (M-health and Health Promotion 241). These kinds of questions are also interesting for conducting interviews with the developer's team.
For the application tests (interviews), I have asked them questions about what they think of the application, while they are using it for the first time. Do they understand the functions and what do they think of the design? And do they have the feeling that they have been put in a risk group by using the application? The testing of the application could also help to concluded if, for so far, they use the
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The setting of the interviews depended on the interviewees, this could be their office, house or practice. During my interviews, it was not about how somebody said something, but what they said. Therefore, I have transcribed verbal, because only the informational content is needed and not their personal emotional about how their feel about this subject. “Even good transcriptions of qualitative interviews are not objective records of the interaction, and difficulty representing affective data via text is not exclusive to mediated interviews […]” (Kazmer, Michelle M., and Bo Xie 272). By not transcribing affective data the interviews become more objective and personal emotions are left out. After transcribing the interviews, I have analysed what information was important by looking from the concept of ‘biopolitics’, patient responsibility, but also about privacy and data collection.
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5. FINDINGS
5.1 PRODUCTION PROCESS
For writing the findings I start with the production process of the Prediabetes Application. At the moment, there is a huge amount of eHealth applications on the market. Each focus on different things, like nutrition, fitness, heartrate, mindfulness, depression or other diseases. It is also a fact that these applications are gaining more popularity, and therefore they play a more important part in our everyday lives. Lupton even states that they present themselves to be an opportunity to ‘take control’ over their (population) health (Apps as Artefacts 608). As explained before, healthcare is changing and is more and more about giving patients the opportunity for self-management. A way of realizing this goal is to engage with eHealth technologies, among many applications. It is desirable that these applications offer the right tools with high quality to indeed improve their self-management. But many of these eHealth applications are claiming to give reliable information about health, but the truth is that the developers most of the time have no medical expertise (Lupton, Apps as Artefacts 609). To take a closer look at the medical expertise of eHealth applications, it is necessary to examine the production process. It is important for my research to expose the motives for developing such an application and what steps are taken afterwards. According to Stanfill, to further research how interfaces reflect cultural common sense and produce a norm is to combine discursive interface analysis with ethnographic examinations of industry workers and their productions processes (1071). Also by telling their story I will explain how the interface is reflecting a period where healthcare has become a responsibility of the patient. In the following part, I will explain their motivations and what work they do to develop the Prediabetes Application.
5.1.1 The project leader
The primary investigator of the Prediabetes Application is a postdoc researcher at the Leiden Universitair Medisch Centrum (LUMC). She works within the team of Niels Chavannes, prof. in eHealth and is therefore involved in many projects concerning eHealth. After doing some research on her, I noticed she did a lot of research concerning the chronic disease diabetes. She told me: “It started with an interest in patient care, specifically about their quality of life, how they feel and their
wellbeing. With a lot of diseases there is a lot going on in the lives of these patients” (Project leader. Interview, 13 April 2017). Next to their medical goals, their personal life must also play an important role. Therefore, she is interested in chronical diseases in combination with patient care.
The reason for her to develop the Prediabetes Application is less obvious than one would think. Of course, it started with the idea to improve the lives of people with prediabetes, but it began with the
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Apple ResearchKit. She tells me: “The Apple ResearchKit is like a set of building blocks, which researchers can use to do more research with afterwards. It is relatively easy software to build an app with, and after patients have given permission, do more research with the data collected by the app on a large scale” (Ibid.). But to develop such an application, the project leader needed more knowledge about diabetes, apart from their department of eHealth. At this point she went into conversation with a psychologist specialized in patientcare for diabetes. Later in this part I will tell you more about her. After their meeting, they decided there were already a lot of applications for a patient with diabetes, and therefore they started to focus on patients with prediabetes; a high risk for developing diabetes. So, the question then was: “How can we prevent the risk of suffering from diabetes?” (Ibid.). By preventing the risk of diabetes nutrition and enough exercise are the most important factors. She explains: “We want to give them insights in nutrition and let them look differently at this” (Ibid.). The kind of information the application gives about nutrition differs from other health applications. Instead of looking at calories or carbs they use the glycaemic index. This index indicates how fast the blood sugar level rises. Research showed that products with a low glycaemic index can prevent the risk of suffering from diabetes. And because this glycaemic index is difficult to understand, the application will simply explain how people can use this information. According to the project leader: “Especially for the people who want to change their behaviour, but do not know how, this application can be a good solution” (Ibid.). The motivation of the application is to give people a choice of how they can change their life.
5.1.2 Psychologist
She is medical psychologist and researcher at the LUMC. Together with the project leader, they try to develop an application to prevent the risk of getting diabetes. She wrote her Ph.D. about
self-regulation intervention by type 2 diabetes patients with their goal to lose weight. She has an interest in chronical diseases and how it is possible for patients to manage their life when suffering from it. Self-management is getting more and more important, describes the psychologist. It means doing what is necessary for your health in the context of your daily life. She says: “Your personal goals must be in balance with your health goals” (Psychologist. Interview, 18 April 2017). These goals can affect each other positively or negatively. This kind of thinking is also central in the creation of the Prediabetes
Application. She tells me: “The app is not like a diet, but is gives you different choices. It gives the
opportunity to choose as optimal as possible, without having to give in a lot. You can still eat a cookie, but the app gives you advice which cookie is the best choice” (Ibid.). In this way, they want to develop an application that is less strict and therefore fits into people’s life.
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I asked her how she thinks about the healthcare moving into the direction of the patient and
stimulation of self-management using technologies. She responded positively: “We are having more knowledge about the fact that we all must take care of our own health and we understand better how caregivers play a role in this. The most prominent goal is to help the patient take care of themselves at home. The doctor now has a supporting and facilitating function” (Ibid.). From this point of view eHealth is getting more and more influence over our health. Together with the doctor and these technologies health is given into the hands of patients. Therefore, the goal of the Prediabetes
Application she says; “Is to raise consciousness about what are good products and how can this fit into
my life” (Ibid.).
5.1.3 The app maker
After finishing the informatics at the TU Delft, he and a friend started the company Innovattic. It is a company that makes applications and mainly they are specialized in eHealth applications. The reason why they chose this direction is because “they want to do something good for society”, he told me (App maker. Interview, 19 April 2017). “They want to inform people with their apps and try let them make better choices” (Ibid.). Their websites states that they try to make healthcare more accessible: “Being patient-centric in a digitizing world” (Innovattic). He tells me: “We want to work with reliable eHealth partners, like the LUMC” (Ibid.). After winning the Dutch Hacking Health hackathon, cooperation with the LUMC started, and therefore the collaboration for the Prediabetes Application. He describes the goal of the application as giving the patient more information about nutrition and helping to make the right choices. Most of the functions of the Prediabetes Application are decided by the project leader and the psychologist. But also, Innovattic had some influence according to the psychologist: “The design that looks like an Apple design is conceived by Innovattic” (Psychologist. Interview 18 April 2017). This must also be connected to the fact that the LUMC wanted to work with the Apple ResearchKit. And because they wanted to work with this software the choices for design and functions are very limited. “It is an easy software to work with but it has limited options” (Ibid.), he tells me.
5.1.4 The app designer
The last interviewee is an interactive designer who works at Innovattic. Being an interactive designer means you must think from the user to make a design, without thinking about how it looks. “Just think, what screens are necessary, what content do we have, what is the tone of the app?” (App designer. Interview, 4 May 2017). When an application is designed for a specific group, like
prediabetes patients, it is important to take these factors in account. “You don’t want people to get lost in the app” (Ibid.). He studied industrial design and is now doing a Masters in interaction design. He says: “My study has nothing to do with making apps, but it does have something to do with designing for users” (Ibid.). He describes the goal of the application as a learning process, but this is not very
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strictly taken. He tells me: “It is a helper, but not too extreme, these people are not in a life threat” (Ibid.). He means that these people are not in danger, but still want to learn how to eat healthier. Therefore, it is not necessary that people feel bad in everything they eat, but they can use it on their own level. “What I especially wanted to do is, put priority to the learning process and make sure that people are not scared like, fuck I have to track my food intake every day, I really don’t feel like it” (Ibid.). He thinks the people will use it in a more relaxed way and therefore will not quit using the application after two weeks. So, next to the risks of the prediabetes patient there is also paid attention to other reasons like; how can we keep the user as long as possible? In the next part I will discuss the Apple ResearchKit; the software where the Prediabetes Application is built with.
5.1.5 Apple ResearchKit
As we have seen, the motivation for developing the Prediabetes Application is to give patients more insights in nutrition and consequently give patients more knowledge to increase self-management. The psychologist tells me this is a positive development in the healthcare, because we are going to listen more to the patients. “We want to know from you, what you are working on, what you are doing and what holds you back? And therefore, patients must take suboptimal choices sometimes” (Psychologist. Interview, 18 April 2017). People can decide by themselves when their life is in balance with their health goals, even if this means their blood sugar level is a little too high.
The other reason for developing the Prediabetes Application is that the development team wants to work with the Apple ResearchKit. What exactly are the benefits of this software? According to the project leader: “Researchers can use this software to do even more research afterwards” (Project leader. Interview, 13 April 2017). In “Apple’s ResearchKit: Smart Data Collection for the Smartphone Era?” Jardine et al. say: “The cost of developing an app using ResearchKit is very low; its modular design minimises the need for specialist coding expertise” (295). Therefore, the saved costs could be used for other purposes. But the app maker was not very thrilled to work with this kind of software; “it is easy to use but very limited” (App maker. Interview, 19 April 2017). Apple ResearchKit is open source framework, because companies can use it to create their own applications, but still is not very extensive. Apple states on their website: “We made the source code of ResearchKit and CareKit available, because we want that everybody can contribute to medical research and take his advantage with better care” (Apple). We have already found two reasons why a medical researcher want to work with the Apple ResearchKit; first because it is not expensive and second it is easy software to work with. It also shows that ideas between different parties can differ, but of course the company
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The third reason is connected to Apple’s statement on their website: “We make medical researchers and doctors more capable. And now you too” (Apple). Since the launch of the Apple ResearchKit scientists have collected a lot of medical data and have led to new insights (Apple). Apple makes this kind of software to do more medical research on a larger scale, but they also say it is more easy for patients to participate in this kind of researches. Apple says: “You do not have to go to the hospital to undergo researches or fill in questionnaires. Instead advanced iPhone-sensors are measuring and result in accurate and objective research data”. They say this will result in an increase of participants and so more and more data collection. Jardine et al. state: “The development of applications has allowed patients to drive their own data collection. In chronic diseases such as diabetes, patients already use applications to collect data about their behaviour, well- being and priorities, a natural springboard to using these tools for research” (295). Still the question remains, does this mean that everybody should have an iPhone? The answer to this is yes, because without an iPhone these eHealth applications built with the Apple ResearchKit cannot be downloaded. Moreover, the iPhone is an expensive device that cannot be afforded by everyone.
As we have seen the Apple ResearchKit is collecting data ‘passively’, so people must put less effort for engaging in medical research. But users of such applications built with this open source software are automatically agreeing to this data collection, before they can use the application. According to Jardine et al.: “There is evidence that users spend little time reading Terms of Service Agreements for Software, which may explain why some smartphone- based health studies have not used online consent methods” (295).After agreeing data is constantly being collected on the background. Next to the application built with the ResearchKit, also other sensors that are already installed on everybody’s iPhone collect data, like touchscreen, microphone and accelerometer. The build in accelerometer for example can measure your physical activity. Next to these sensors, applications can use questionnaires to collect data about behaviour of well-being of their users. Jardine et al. concludes that if it is made more clear that the data collection is transparent the Apple ResearchKit could be more useful for research with correct collected data (296).
There are already a few applications built with the Apple ResearchKit. For example, Autism & Beyond, EpiWatch, Asthma Health, StopCOPD, Concussion Tracker, GlucoSuccess, C Tracker, Mole Mapper, PPD ACT and SleepHealth, all developed by universities or hospitals. The app designer tells me: “ResearchKit is relatively new, and has as goal to let all these apps work together, the apps concerning health. The benefits are that all these apps can combine data” (App designer. Interview 4 May 2017). He says this is also more easy for users, because these applications already know their medical data without them having to fill it in again (Ibid.)
