Health 2.0:
A Symptom of the Neoliberal Healthcare
Author: YooJin Chelsea Jang
Address: 5-703, Hanyang Apt, Nakmin-Dong, Dongnae-Gu, Busan, Korea Mobile: +41 79 795 85 93
E-mail: agneschelsea@gmail.com Student Number: 10618678 Date: 27 June. 2014
Supervisor: Niels van Doorn Second Reader: Carolin Gerlitz
Media Studies: New Media and Digital Culture University of Amsterdam
Table of Content
Chapter 1. Introduction ... 3
Chapter 2. Dismantling Health ... 6
Chapter 3. Neoliberal Healthcare and Patient Empowerment ... 11
3.1. Neoliberal Healthcare ...
11
3.2. Neoliberalism as Moral Imperative ...
13
3.3. Risk Subjectivity ...
16
3.4. Patient Empowerment ...
18
Chapter 4. Health 2.0 ... 22
4.1. What is Health 2.0? ...
22
4.2. Web 2.0 as Participatory Web and Health 2.0 Platforms ...
24
Chapter 5. Methodological Framework ... 27
5.1. Overview of Methodology ...
27
5.2. Research Design ...
30
Chapter 6. Results and Discussions ... 35
6.1. Neoliberal Health 2.0: Marketisation ...
35
6.2. Technologies of Usership: Technique of Knowledge ...
36
6.3. Technologies of Usership: Technique of Participation ...
40
6.4. Case Study 1. WebMD: Knowledge is Power ...
43
6.5. Case study 2. PatientsLikeMe: Sharing is Caring ...
50
Chapter 7. Conclusion and Discussion... 57
References ... 59
Appendix 1. List of Figures ... 65
Appendix 2. List 1-3. ... 66
List 1. Original sub-themes ...
66
List 2. Selected sub-themes ...
66
Chapter 1. Introduction
Figure 1. A Meme about online health information seeking. (9gag.com)
Above is an internet meme1 from 9GAG(9gag.com)2 that humorously points out the confusing nature of online information sources and the possibly negative consequence of seeking health information on the internet with limited health knowledge. The fact that similar memes regularly get high upvotes on 9GAG shows the prevalence of the phenomenon of online health information seeking and shared frustration in doing such. For many internet users, it has become a natural instinct to open a search engine and search for symptoms when they experience unusual pain in their bodies. Another substantially growing phenomenon is that Smartphone users own at least one application that tracks any aspect of their physical activity or status such as running routines, menstruation cycles or eating habits (Research2Guidance)3. These interactive health behaviours on the web are termed health 2.0 in this study which is a combined word denoting web 2.0 and health. Health 2.0 practices include searching for health/medical information on the web, sharing it on social networking sites and tracking one’s health and sickness using the web or mobile devices. Being able to know more about one’s body and how to maintain health or to manage illness without spending much money on medical services is what attracts more and more people to participate in these health 2.0 practices.
The health 2.0 phenomenon is a new but fast-growing healthcare practice as it involves already popular features such as social networking or multimedia sharing. Moreover, its
1 An internet meme is an “image, video, piece of text, etc., typically humorous in nature, that is copied and spread rapidly by Internet
users, often with slight variations” (“Meme”).
2 9GAG is a globally popular community comedy site of global traffic rank #251 by 02 June 2014 (Alexa). User-submitted memes
are shared and voted “up” or “down” by the users, which then classifies the more “upvoted” contents as Hot or Trendy memes.
3 The number of mobile users who have downloaded a health application on their smartphones at least once was estimated to be 247
importance is evident in that it interconnects the very matter of human vitality, health and illness with new media technologies such as web 2.0 or other types of health devices. However, studying the health 2.0 phenomenon in new media studies perspective is rare so far. In terms of scholarly studies on health 2.0, there are already many applied studies published in medical journals but it is difficult to find critical studies. Many of them are focused on the effective and rightful application of this new technology in the broader domain of medical and healthcare practices. Their aim is to inquire into the ways in which physicians or healthcare authorities can utilise web 2.0 to empower patients to make their own health decisions, how to guide patients to correctly use the health information on the web to educate themselves, how to reform and improve patient-centred healthcare systems using health 2.0, or how to construct a health website that would successfully support patients’ autonomy (Bos et al.; Hesse et al. “Social”; Wald et al.). As such, the recurring images used by the researchers to portray patients who use health 2.0 are ‘informed’, ‘central’, ‘in control’, or ‘autonomous’, which ultimately can come under the umbrella of ‘patient empowerment’. It is undoubtedly true that with open access to a vast amount of medical knowledge and technological support, today’s patients have more medical knowledge and can do more about their health than ever before. However, it is still an open question whether or not this ability to know and act equals empowerment. Also, there is a need to recognise that patient empowerment is not the only truth that was brought by health 2.0 phenomenon. I would argue that viewing and situating patients based on that one aspect of empowerment tends to obscure the bigger political frame of healthcare systems and their governance, and thus does not require scholars to point to the increased responsibility of the patients for their own health, which eventually extends to the health of the society. In fact, health 2.0 not only empowers its users; it converts them from users to produsers, facilitates the marketisation of healthcare, and perpetuates a neoliberal morality of self-sufficiency.
The main objective of this study is to examine the relationship between health 2.0 and neoliberalism. It aims to reveal to what extent health 2.0 plays a role as part of neoliberal healthcare reformation by discussing how health 2.o facilitates and intensifies the social and politico-economic reconstruction of contemporary healthcare.
Chapter 2 presents a fundamental framework for the subsequent chapters. In order to discuss health and healthcare as an instrument of government, there is a need to first dismantle the concept of health into an epistemological, socio-politico-cultural construct. Discussing in more detail the politico-economic reconfiguration of healthcare requires acknowledging the historical and socio-political dimensions of health, which have been extensively studied by Michel Foucault. This chapter will discuss such crucial concept as biopolitics and
governmentality, and show how health has been instrumentalised by the government in order to manage its population using the technology of normalisation. Then, it will move on to a discussion about the relationship between neoliberalism and healthcare.
The influence of neoliberalism on healthcare system since the late 1900s is discussed in Chapter 3. Neoliberal healthcare reform aggravates the marketisation of healthcare and opens up competition among healthcare service providers. As the central involvement of the government in healthcare shrinks, individuals are inclined to feel more obligated to become autonomous and self-sufficient. In short, marketisation of healthcare and subjectivation of the self-responsible citizens are the most important consequences of neoliberal healthcare reform on which this thesis is focused. Neoliberal governments have distinctive technologies to mobilise and subjectivate their citizens. Risk subjectivity and empowerment discourse will also be discussed as governmental techniques of neoliberal subjectivation, and they give an insight into the relationship between neoliberal subjectivation and health 2.0.
Chapter 4 comprises the fundamental discussion of health 2.0 and its technological and conceptual structure, web 2.0. Again, this study aims to demonstrate how health 2.0 acts as a part of the neoliberal turn in healthcare. First, the corpus of this study on health 2.0 needs to be delineated. Also, as health 2.0 is a specific type of emergent application of web 2.0, it will be contextualised in the larger picture of the critical discussions of web 2.0.
In this study, two layers of research were conducted; a content analysis of 24 health 2.0 platforms’ discursive self-positioning, and two case studies on contemporary health 2.0 platforms, WebMD and PatientsLikeMe. In order to move on to the empirical research on health 2.0 platforms, Chapter 5 offers an extensive methodological framework. The convention of platform studies will be contemplated in order to show the focus points and the intention behind the empirical researches.
Chapter 6 is devoted to discussing the results of this empirical research. Two techniques of subjectivation used by health 2.0 platforms will be discussed, which I call Technologies of Usership; one that emphasises knowledge and constant education of the self about health, in a “knowledge is power” context; and another that points to a “sharing is caring” morality, which urges users to participate, produce and share the contents, which the platforms can then repackage and commodify. Case studies of two health 2.0 platforms, WebMD and PatientsLikeMe show how the Technologies of Usership materialise in the forms of the features and functions of contemporary health 2.0 platforms.
Chapter 2. Dismantling Health
Studying health as a multilateral concept with social, political, and economic dimensions to it needs to be preceded by a process of dismantling the a priori notions of health and disease with which many of us are familiar. Because of the long-standing binary opposition between health and illness, it is easy for the general public in modern societies, including healthcare workers and patients, to overlook the fact that health is a concept that is socially constructed and politico-economically configured. In other words, when the question of ‘what is health?’ is defined by what we take to be illness (Canguilhem, “The Normal” 243), it often has been eventually reduced to a rather vain question: does one suffer pain or not? Also, it is an understandable difficulty not to be able to refute a normative conceptof which the impact is so vital and direct to life. Nonetheless, epistemological definitions of health, illness, medicine or healthcare are worth examining since they are fluid concepts that change over time. This is affected by the transformation of the way in which people perceive and talk about their physical and biological body, why they get ill, and how they manage their health.
It is rarely contested that health and well-being are rigidly venerated states to which everybody aspires, whereas sickness and disease are despised and need to be avoided at any cost. This presumed notion - the binary opposition of health and illness that is largely perceived by lay people - results from the norms of the given time and space. These norms say that a healthy body is good and an ill body is bad, and it derives another moral norm that some bodies are healthy and others are not. Is health, however, the normal status, and illness the abnormal one? As Canguilhem answers, “norms, whether in some implicit or explicit form, refer to the real values, express discriminations of qualities in conformity with the polar opposition of a positive and a negative (“The Normal” 240). Therefore, to say that health and illness are connected to normative beliefs is to say either positive or negative value was assigned to each ‘real’ status of bodies. This points out that healthy and ill statuses are value-neutral, and this value assignment is the basis of the disparity between the two.
Foucault studied the political dimension of health as an instrument of governmental practices, which he terms governmentality. In his work on the history of sexuality, he traces the history of the technologies of power used by governments in order to provide a background to his study of sexuality as a political object. Although his end focus was on sexuality, this analysis of power over life is highly useful to understand how health and healthcare can be institutionalised and instrumentalised by governmentality in the same way.
Governmentality is a concept termed by Foucault to refer to the regime of power with “the population as its target, political economy as its major form of knowledge, and apparatuses of security as its essential technical instrument” (“Security” 108). It also means a process by which a particular type of power, government, takes over all the other forms of power such as sovereignty or discipline in the eighteenth century. Here, governing the population instead of the people or subjects is to govern the life of the entirety of the population as a whole. This is closely linked to the concept of biopower, which will be discussed below. Also, the act of governing does not only signifies the modern meaning of political state administration but also significantly includes guidance and control of the self. (Lemke “Governmentality” 2). That is, governmentality is understood as a continuum of government that permeates the subjectivity of the subjects (Foucault “Birth” 201).
Before the eighteenth century, starvation and epidemics presented a dramatic threat to the population and thus also to the state that managed it. However, with the dramatic economic growth in the 18th century and consequent increase of resources and the development of democratic states, those life-threatening risks, or the fear of death, quickly lost their formidable force to control the population as a whole. Therefore, it was no longer about dominating with the menace of death but about optimising and mastering the lives of the population. This power over life is termed biopower, and its system biopolitics. Biopower is concerned with the behaviour of the bodies in one dimension, and in the other it deals with governing the biological vitality; that is, the socio-economic productivity of the population. Biopolitical governmentality, therefore, is the act of governing the population by rendering the activeness, usefulness and docility of the body so as to expropriate its productive force, and supervising and regulating the life (“History of” 135). Biopower later expanded to include more general issues that concern the biological bodies; life, health, race, or space of existence. It is used to subjugate individual bodies and control populations using various disciplinary techniques, but does not threaten them with death. Instead it invests in life, which means constantly regulating, modifying and correcting living bodies as well as subjectivities. This way, life became not only the object but the objective of the power and came to act as the reason for any political activity (Foucault, “History of” 142-5).
So, in the relational field between government and its population, there emerged, on the one hand, the rights to the body and to life; not merely to subsist but to maintain a full and active life, hence, they demanded the right to good health and the right to be able to realise their potential
(ibid.). On the other hand, institutions that produce knowledge about life and health and control its distribution
—
such as institutions of education and medicine—
became disciplinary and biopolitical apparatuses that aimed to regulate and impose health norms on the population. Producing knowledge and educating the population about what is healthy or unhealthy and how to manage the optimal state of the body reinforced the power of “normalising” these bodies (Foucault, “History of” 145, Abnormal 49). However, it is vital to note that the apparatus of normalisation is not a one-way force from the political state to the subjects. As it was mentioned above, governing power resides also in the self. Foucault emphasised that governmentality exploits strategies of objectivation and subjectivation. First, objectivation concerns those technologies that enable the exertion of governmental power over their object, that is, to objectify individual bodies. Second, subjectivation is achieved through the “technologies of the self”, which pertains to the internalisation of power relations by individuals. Thus, subjectivation is a government within the minds of the subjects. Subjectivation works in accordance with the power to achieve a certain type of healthiness, happiness or wisdom (Foucault “Technologies” 18-9). Biopolitical governments constantly evaluate the population in relation to norms and rules; for instance, to assess whether they subjectivate themselves according to the norm of healthiness (“Abnormal” 47). Therefore, by pointing out how the population is voluntarily normalising themselves by constant examination and surveillance, it becomes apparent that the concept of governmentality offers opportunities to discern what we, as the subjects, accept as norms and believe to be true.Foucault’s discussions on political dimensions of health and the instrumentalisation of health and life issues by governmentality are contextualised in the realm of healthcare by Deborah Lupton. She examines how the power relations between the healthy and the ill, the physicians and the patients are materialised in socio-cultural artefacts. Her use of specific literature, advertisements, social campaigns and autobiographies is the inspiring factor behind the ways in which this thesis puts health 2.0 platforms under scrutiny. She examines how the use of language, metaphor and image shapes the perceived reality of health and illness in order to study medicine’s role in the socio-cultural dimension of the lives of people (“Medicine” 173). Healthcare is seen as an assemblage of discourses, technologies, stereotypes, and politico-economic dynamics between the well and the sick and between medical practitioners and patients. Her objects of study show that there have been efforts to change what the truth is about being healthy or ill. As long as there is an effort to change, or to put it more neutrally, an effort to offer alternatives to the ways in which people perceive and talk about health and illness, the
reality at a given time and space is subject to negotiation, and amenable to manipulation (Lupton, “Medicine” 174). For example, social campaigns on AIDS can negotiate the norm and stereotypes around the people who have AIDS or HIV by, for instance, changing the language that is used to describe them. A simple change of word from ‘victims’ to ‘survivors’ is capable of transforming the normalised conceptions of people living with HIV/AIDS (ibid.). It is self-evident that such framing of a certain illness or a state of health can engender different attitudes shown towards the patients, not to mention that they will have different social and political relationships with others members of society. The relationship that patients have with fellow patients, the public and medical practitioners, and also the relationship between citizens and governmental institutions in the healthcare sector is negotiable.
However, it is not easy for the citizens to win in such negotiation because of the pre-existing norms that are used to subjectivate them. Labels
—
for example, such as victim or survivor—
are not socially and politically neutral. They are essentially transformed into psychological and moral labels of ‘good’ or ‘bad’ in the minds of the people. Norms are formed based on these moral labels and they act as the foundation and legitimation of power that is exerted to control the labelled individuals (Foucault, “Abnormal” 25). The institutions of medicine such as hospitals or research laboratories that produce knowledge and power over those norms are disciplinary apparatuses that can be instrumentalised by government for managing the health of individual and the population (ibid.). Therefore, restructuring the normative concepts of health and illness redefines the relationship between government and its the population because it can justify and legitimise different policies, actions, and decisions by governments.This chapter was a groundwork for the upcoming discussions of the politics of healthcare and health 2.0 platforms. In summary, health is a politically laden instrument that can be used by the government, with the power to impose norms on the individual and induce surveillance by the many over the many. One must keep in mind that health and illness are equally real only with opposing moral values attached to them in order to effectively engage in the socio-political analysis of healthcare. Moreover, the concept of health is constantly under negotiation among different social parties and has the potential power to redefine the relationship between government and citizens. Therefore, healthcare does not unilaterally imply the universal endeavour to maintain good health; rather, it is an assemblage of socio-politico-economic principles and practices. With the basis of these philosophical, political and social dimensions of the concept of health and illness, this study can ensure that the following analysis of
neoliberalism in healthcare will not fall into the ‘natural or unnatural’ and ‘true or false’ dispute, and will prevent the upcoming discussions about power relations between institutions and subjects of healthcare from becoming reduced to questions of good or evil.
Chapter 3. Neoliberal Healthcare and Patient Empowerment
3.1. Neoliberal HealthcareChapter 2 was devoted to the general and broader revelation of the politics of health by examining Foucault’s concepts of biopolitics and governmentality and how they are relevantly situated in terms of the healthcare domain. Disassembling the a priori and unilateral notion of health was proven useful by Lupton’s socio-cultural study on medicine. Recalling that the main objective of this thesis is to discover the relationship between neoliberal governmentality and health 2.0 practices, Chapter 3 will first discuss the influence of neoliberalism on healthcare in general, before establishing the direct link with health 2.0. As discussed previously, neoliberal governments use particular techniques to subjectivate people to be responsible and self-sufficient actors in the healthcare system. Here, the focus will be on risk subjectivity and empowerment as two of those techniques, because of their inextricable connections with new media technologies.
Neoliberal forms of reason emerged after the Second World War. One of the most influential neoliberal scholars, Friedrich Hayek, published his ground-breaking book on liberty, which remains the philosophical template of contemporary neoliberal healthcare reform (Gaffney). He poignantly opposed the universal healthcare system under the auspice of the state and asked to reduce the government force that hurts the economic system. Hayek’s novel claim was influential; it was that healthcare is not “objectively ascertainable”, which means that all individuals have different levels of priority for healthcare in their lives (“The Constitution” 298). For example, for some people, supporting their family is more important than getting their disease treated, while others prefer to spend money on preventive care rather than buying new clothes. Therefore, each person should be able to decide by and for him or herself the need for healthcare proportionately to their other daily needs (ibid. 298-9). This mode of thought is also vitally linked to neoliberal human capital theory, especially the work of Gary Becker of Chicago School, which contributed to theorising American neoliberalism (Dilts 130). Human capital theory views human as means of production that produces economic return, and whose productivity is increased by investments such as education and healthcare (Becker). Individuals are entrepreneurs of the self, and all human activities are redefined through economic logic, including investment, consumption or production (Dilts 130). Foucault also discusses this in
terms of neoliberal governmentality (Foucault “Birth of”). Foucault contended that human capital theory comes down to the homo economicus view of human activities, which regards human as essentially economic beings whose activities
—
investment of time or other resources—
will produce the income of satisfaction of the self (“Birth of” 226).
Then, starting by recognising healthcare not as a universal need, nor as a right, but an investment the amount of which always varies, neoliberal arguments maintain a strictly economic perspective on viewing social welfare systems like public healthcare. This entails that healthcare should be treated the same way as other commodities, such as buying a car or paying the rent. Therefore, it applies rationality of markets
—
supply and demand, free competition, profit maximisation, freedom of choice—
in the same way to the healthcare service providers. In the United States, for example, recent healthcare reforms under the name of the “Affordable Care Act” have come with a ‘health insurance marketplace’ (Healthcare.gov) where people can compare and purchase government-regulated and standardised healthcare plans. Not only health insurance policies, but also other healthcare service providers such as hospitals, clinics and primary care providers are put into competition by market logic. Also, having the freedom to choose between hospitals or healthcare services means that healthcare consumers need to calculate the appropriate proportion between price and quality according to their ability. Therefore, the neoliberal approach to healthcare provision encourages a social atmosphere in which a) healthcare providers need to compete against each other by deploying marketing strategies; and b) each individual, regardless of age or other social or economic status, has to work for—
and earn justly—
his or her buying power in terms of healthcare. Eventually, as the logic goes, they personally are the only ones who will be able to choose the best—
or most cost-effective—
service and look after their own health.One point to make clear here is that neoliberalism is a particular direction in which classical liberalism was revived (Thorsen and Lie 2). Therefore, the general emphasis on market freedom and individual economic autonomy can be understood as classical liberalism that dates from the 18th century. Neoliberalism (in theory) is, however, an expansion of economic liberalism into broader sectors of the society because market rationality is an ethical belief (Treanor). Therefore, it is neoliberal to believe that marketising previously social sectors such as healthcare will bring healthy competition and better service. Also, neoliberal process extends the individual’s responsibility for his or her own choices which accompanies individual freedom in the market into healthcare and other welfare realms (Harvey 65). Therefore, within the context of the
neoliberal healthcare system, the failure of the health of an individual is always an outcome of wrong personal choices that cannot be attributed to systemic shortcomings (ibid. 65-6).
In his book Birth of Biopolitics, Foucault discussed the concept of governmentality in relation to neoliberalism, which also is an integral part of this study. What he categorised as the characteristics of neoliberal governmentality is the extension of economic analysis into domains that were previously non-economic. (“Birth of” 219; 247). Among others, the augmentation of the status of the economy is based on the thought that the free market is naturally oriented to indiscriminative growth and will bring wealth. Such a belief of the neoliberal is evident as he contends:
If freedom of the market must ensure the reciprocal, correlative, and more or less simultaneous enrichment of all the countries of Europe ... then it is necessary to summon ... an increasingly extended market and even, if it comes to it, everything in the world that can be put on the market. (Foucault, “Birth of” 55)
Thus, neoliberal governmentality asserts that the application of market rationality can do wonders to public and social sectors, which leads to the deployment of the government’s disciplinary powers in fewer social sectors and to reliance on market logic in the broader spaces of daily living. This study follows Foucault’s conception of neoliberal governmentality in order to discuss the influence of neoliberalist policies and modes of thought in health and healthcare systems.
3.2. Neoliberalism as Moral Imperative
Based on the discussion above, the two fundamental principles of neoliberalisation can be summarised as marketisation of healthcare and responsibilisation of patients. First, as the healthcare sector is not unlike any other economic sector, government must ensure free competition among healthcare service providers because a free market of healthcare will bring better quality as well as lower cost. Second, the power to make decisions about one’s healthcare and the responsibility for it belongs solely to the individual’s independent discretion. The theory that these principles would lead to lower healthcare costs and higher efficiency was further encouraged by the World Bank when it published its 1993 World Development Report (WDR), diagnosing the problems of the healthcare system and providing guidance to the due transformation of health policies worldwide (World Bank). However, neoliberal healthcare
policies have been criticised on the grounds that they aggravate inequality, do not increase quality or efficiency, and cause even poorer health (See Navarro; Homedes and Ugalde; and Coburn). If so, it seems contradictory to the logic of the World Bank itself which published report stating that: “Good health increases the economic productivity of individuals and the economic growth rate of countries, investing in health is one means of accelerating development" (World Bank). Then, if neoliberal healthcare reform causes poorer health for the population as it was criticised, it is also in conflict with Foucault’s idea of modern biopolitical government that it should devote itself to securing and optimising the vitality and work forces of its population for the survival of itself and its population (“History of” 139). However, when one acknowledges that neoliberalism can act as moral imperative, not merely a politico-economic principle, it becomes clear that neoliberal healthcare does not impede governmental competence but is actually in line with it.
Neoliberalism becomes a moral imperative by producing a certain desirable image of a good citizen and uses morality as a tool with which to encourage citizens to internalise neoliberal rationality. A good citizen, of course, is an economically conscious individual who complies with market logic sensitive to gain and loss, and who is able to actively produce his/her social worth. Also, as neoliberalism is a political rationality that justifies a dismantling of the welfare state and compensates it with more individual capacity to self-regulate, take responsibility and manage risks (Lemke “Birth” 203), it aims to cultivate a certain form of subjectivity that reflects such an image of good citizenship as being autonomous, free, active and in control of oneself (Dean 15, see also van Houdt et al.). Therefore, morality is the technology that neoliberal government uses to convince citizens to be emotionally driven to become such desirable individuals. Neoliberal government can mobilise the population into participating in activities that can generate more social-economic worth, such as volunteering in social care services. The moral dimension of neoliberalism is extensively studied by Andrea Muehlebach in her book “The Moral Neoliberal”. As she shows, a moral obligation to be a worthy part of society works well for mobilising citizens, especially for the economically marginalised groups who cannot earn their worth by economic activities anymore (Muehlebach, “The Moral” 157-9). Although her observations and analyses are strictly limited to the Italian context, her intention to determine why certain neoliberal strategies are so compelling that citizens are mobilised to work for free and what the role of affect and morality is in the neoliberal subjectivation is clear. That is, the neoliberal state and its moral authoritarianism contrast with some productive characteristics of citizenship such as activeness (6; 36).
As such, a neoliberal reconfiguration of healthcare is capable of imposing norms on people and uses that to judge their morality and justify the assertion of power over them. Normative morality in terms of health can be foisted both by institutions and by fellow citizens. The example of obesity explicitly illustrates this. Obesity, a body weight that is higher than “normal” range, has been widely medicalised and has become a disease, to the point that the increasing rate of which is called an epidemic4. Countless social campaigns call people to ‘fight’ obesity, ‘solve’ or ‘end’ it through the means of learning, dieting, and physically moving5. The fact that there are accessible sources of accurate and abundant knowledge about how to be healthy becomes a basis on which to blame deviant citizens for not complying with the provided knowledge (LeBesco 156; 161). This shows health as a personal responsibility and an object of endeavour and achievement. In fact, although there are actual medical issues that are caused by obesity, there is also a political aspect to the equation of excess weight = unhealthy (Campos 40). A particular type of body, of which the ratio between weight and height falls under the range of arbitrary standard6 is considered normal, rendering the other body types abnormal and deviant (LeBesco 155). What is normal is the representation of the norm of the given time and space, and the so-called normal people are capable of creating and reinforcing social rules (Canguilhem, “The Normal” 239). Therefore, in neoliberal societies, overweight people are deemed lazy, out-of-control, and unhealthy, and are thus bad citizens who have not effectively managed their risks (LeBesco 157; O’Byrne and Holmes 99). That said, obesity is just one example of the moral neoliberal subjectivation of healthy citizens; this principle applies to other ailments as well. As social risks such as becoming obese or falling ill transform into problems of failing in self-management, the responsibility for health, illness and life is, therefore, lifted from society and the state and put onto the shoulders of individuals (Lemke “Birth” 201). Neoliberal governmentality is not an authoritative governmental power that is exerted upon the citizens but is a continuum of the act of governing which is done not only by the entity of political government but also by the citizens themselves. That is, producing highly moralised subjectivity of self-regulation and self-responsibilisation (ibid.; Foucault, “Technologies” 19) is an important part of governing. Therefore, the ways in which neoliberalism injects morality into citizenship do not obstruct governmentality from managing its population’s health; it is exactly the way in
4 The obesity epidemic has been widely used in many scholarly studies that concern the rising numbers of overweight people, many
of which are in the US but also in a global context.
5See ‘Campaign to End Obesity’, ‘Obesity Action Campaign’, and ‘Let’s Move Campaign’ among others.
6 For example, the most common measurement of body weight BMI (Body Mass Index) has standards for underweight, normal,
which governments transfer the locus of responsibility for health to the citizens through technologies of subjectivation.
The realm of health is highly marketised and the population is bound by the morality of self-responsibility to work hard to attain the normative sense of healthy members of society. When the moral subjectivity is ready, the next step is to make someone physically act on their own or socially-reflected health beliefs. The abovementioned moral self-obligation is an effective method, but at times it is just not enough to say “I should do it”. Sometimes, the common phrase “I can do it” is needed to actually motivate oneself to act. These are two ways of mobilising and subjectivating ‘good’ neoliberal citizens that work with each other; risk subjectivity and empowerment.
3.3. Risk Subjectivity
Feeling empowered and capable of handling one’s health is not necessarily accompanied by real actions, such as when people feel or think that they are capable of correcting unhealthy habits or adopting a healthier lifestyle, but still do not act upon it. The reasons for this laxity may vary; lack of time, lack of other resources, or lack of motivation. But why should one do it? In other words, what is the practical logic behind the moral imperative? The answer starts with “because otherwise….” and ends with the possible consequences that one will have to accept or suffer, which is exactly what risk means7. Risk can be an instrument to encourage oneself to overcome or even sacrifice those deficiencies and actually act upon one’s empowered feelings. I argue that risk is an effective tool of subjectivation to shape responsible citizens in neoliberal healthcare; those who are well aware of the risks they face and are responsible for their own health. This exacerbates with the use of new media technologies such as health applications or devices in their health management.
But first, how does risk subjectivity function within the context of health? Health risks may reside externally to the human bodies, but many health hazards are embedded in human genes. In most cases, however the probability of inheriting the risk is uncertain8. So ironically,
7Dictionary meaning of risk is “the possibility that something unpleasant or unwelcome will happen” (“Risk”).
8With a few exceptions of extremely rare diseases, genetics have calculated the probability of inheritance. The calculated
uncertainty might go as; “an estimated 80 percent lifetime chance of developing breast cancer and a 40 percent to 60 percent lifetime chance of developing ovarian cancer” (Siteman Cancer Center).
immanent health risks are calculated to be uncertain. This unforeseeable type of risk is always present, no matter what physical state one is presently in. In other words, this notion of intrinsic susceptibility makes people believe that all persons have the potential to be ‘at risk’ of falling sick, even though one might feel perfectly well. This way, an asymptomatic state does not equate to being well and healthy anymore because the apparent health is at best a “pre-symptomatic” state (Rose 19. Emphasis added). This process is discussed as risk subjectivity, in which citizens are required to think of themselves as risk subjects (Levina 152). In the healthcare context, risk subjectivity drives the realm of healthcare and medical authorities to break their boundaries of jurisdiction. If the previous domain of healthcare was receiving therapeutic management for the ailments, the extended concept is that which encapsulates the management of healthy bodies as well as ill bodies. Now healthcare means the management of possible health risks, maintenance of homeostasis and optimisation of vitality (Rose 10). Non-patients become pre-patients who always need self-managing, not only trying to maintain current good health but to accomplish a stronger and more impermeable body. Risk is, therefore, a crucial instrument through which to promote self-management as an essential morality of good neoliberal citizens who are aware of, and can effectively manage their risks and take responsibility.
Here, new media technology in healthcare such as personal health devices9, mobile health applications and health 2.0 technologies adds a tricky aspect to perceived risk. Risks that cause harm to people and the society are often invisible and dependent on interpretation; therefore, they can be conceived by the possibility of knowing about them (Beck 22). In other words, as the technology used to measure the risk advances and as more is known about a certain risk, the more severe the risk is perceived to be. This brings back the meme in the introduction. Before the internet or any other personal health assessment devices, when one felt ill, he or she had to visit the doctor and get examined, sometimes wait for the result and then they would know rather accurately what risks they faced. Now, it has become possible to check and calculate the risks by inputting some data, it is much easier for the perceived health risk to increase. What is tricky about this new media technology on health is that it also offers tools to enhance the ability to avoid or cope with the risks. For example, health tracking applications can collect data of the user’s physical movement and give insight into their usual or unusual patterns in order to prevent certain disorders; health social network platforms offer venues for the users to share information about their health and diseases, which can encourage a user to seek a doctor's help
9 Personal health devices can include compact machines that measure glucose level, blood pressure, sleeping habits, running habits,
before developing a more serious illness. By rendering previously unpredictable health risks calculable, new health technologies are discussed among the users as the source of control and empowerment over their own health (see Tilenius; Palo Alto Medical Foundation).
3.4. Patient Empowerment
Empowerment discourse in healthcare produces new relationships between patients and healthcare providers whereby patients are more informed and apt to take control of the decision-making process. Indeed, the UK Department of Health published in 2001 a government plan titled “Expert Patient”, emphasising the extended role of patients with chronic illnesses and their empowerment;
The era of the patient as the passive recipient of care is changing and being replaced by a new emphasis on the relationship between the NHS and the people whom it services – one in which health professionals and patients are genuine partners seeking together the best solutions to each patient’s problem, one in which patients are empowered with information and contribute ideas to help in their treatment and care. (Department of Health, “Expert” 9)
This tells the patients that being an expert on what problems they have, what they want and what they can do, and thus having more professional knowledge on their health and healthcare, will empower the patients to the point where they become partners with the government. The discourse of patient empowerment has been strengthened ever since. In fact, it intensified; four years later, the updated version of the same publication
—
healthcare plan—
is titled “Creating a Patient-led NHS” (Department of Health, “Creating”), repositioning the government from an equal partner in healthcare to a supporting force, and putting patients in the driving seat of healthcare.However, does this “empowerment” truly empower patients? In other words, did this discourse of empowerment stem from mutual agreement on this new status? This question of the validity of patient empowerment was asked by Peter Salmon and George M Hall from the patients’ perspective. The idea of empowerment became unassailable in healthcare studies because of the emphasis on individual choice and the favourable results from some psychological research that showed empowered patients to be happier (Guadagnoli. qtd in Salmon and Hall 53). However, the arguments that patients must be empowered are still made by the authorities; governments or healthcare providers (ibid.). Salmon and Hall criticise this one-way empowerment because
certain medical practices, which have been commonly perceived as empowering, are in fact disempowering the patients. For example, PCA (Patient Controlled Analgesia) which is supposed to ‘give control’ of opioid10 intake to the patients, in fact deprives them of the right to receive due attention from medical staff. Also, such programmes as pain management that teach patients how to cope with painful conditions transfer the responsibility of managing pain from healthcare professionals to the patients and make them suppress their expression of pain (54). In this way, patient empowerment discourse and practices are the deceitful manifestation of one-way power relationships between healthcare professionals and patients. This study is one of the few critical perspectives on patient empowerment and presents a compelling analysis of the patient’s side of the story in empowerment discourse. Nevertheless, in the scholarly studies on healthcare, there is still a missing endeavour to recognise the political dimension of this patient empowerment in neoliberal societies.
So, how to approach empowerment from a political perspective? Just as the concept of health should be dismantled first in order to discuss the politics of it, empowerment also needs some disassembling of its presumed meaning. The empowerment of certain subjects has been considered a positive change in the hierarchical power structure between the government and its citizens, usually in the optimistic political discussions in which systemic problems of disparity or injustice would be solved if people had more power. To have more power sounds vague, but in the end, it means to be capable of political participation. Then, empowerment can be translated into encouragement of citizens to participate in their interests (Cruikshank 68). This all sounds good. No one is repressing the power of the citizens; they are promoting it. However, empowering is also an action that requires both subject and object. In other words, if citizens are empowered, there is a governing power over them, which is doing the empowering. Empowerment is still a kind of power relationship (70) although the word gives the impression that it somehow dissolves this. Then, in Foucaultian terms of governmentality, empowerment would be a technique of disciplinary power that is used to produce self-sufficient, politically active and socially worthy citizens. More relevantly, patient empowerment can be understood in the same logic. Among other possibilities, patient empowerment can be defined as;
an educational process designed to help patients develop the knowledge, skills, attitudes, and a degree of self-awareness necessary to effectively assume responsibility for their health-related decisions (Feste and Anderson 139).
10 In medicine, opioid is “a synthetic drug ... possessing narcotic properties similar to opiates but not derived from opium”
(“Opioid”). PCA is usually used for post-operation patients to administer analgesics (painkillers) by themselves whenever they feel the pain.
Empowering patients not only involves preparing them for risk with knowledge and skills, but also rendering them responsible for their own health. The clash of the undissolved power relationship can be found in this hyper-empowerment era due to the aforementioned risk subjectivity. Even though patients became more knowledgeable, resourceful and in control, the health risk is still projected onto their future. Risk subjectivity creates an anxious climate about their health; thus, healthcare professionals can still exert powerful leverages over their patients/consumers. Here, the neoliberal government needs to use the technique of subjectivation carefully. The technology always entails an inward conflict of finding the optimal but not maximum point of empowerment. It is a technology of power that reinforces the self-efficacy of the bodies but at the same time it needs to produce more docile bodies. This contradiction is the knot that neoliberal governmentality always needs to untangle; it needs to empower citizens, “without making them more difficult to govern” (History of 141).
Now that it is established that empowerment, be it real or illusory, does not dissolve power relations between government and citizens or medical authorities and patients, Salmon and Halls’ criticism on one-way empowerment as a solution will be revisited briefly. They argue that the application of web 2.0 technologies in the healthcare domain is the way to bring about the ‘true’ empowerment of patients (Bos et al.). “Patient 2.0 empowerment”, as they call it, is empowerment from the patients’ side. That is, as opposed to the rather traditional sense of patient empowerment that clearly entails the disparity between patients and professionals, healthcare practice via participatory web 2.0 technologies, also called health 2.0, can be the right way to truly enhance the autonomy of patients. This will be done by having ready access to adequate information that improves the quality of patient-doctor communication, and more importantly, by participating in patient networks so that patient communities will be able to assert rightful power in the decision-making process concerning medical research. It is true that health 2.0 can enhance accessibility to health information and also provide the venue for the grass-root movement by the patients to influence political decisions in healthcare. It is also true that patients who have access to the web will obtain abundant health information which will lead to greater knowledge about their health and illness, which will then lead them to make better, cost-effective, customised decisions about their healthcare. This gives them more control of their bodies and thus makes them empowered and autonomous compared to patients of the past. An increasing number of studies are being conducted on health 2.0 from a variety of scholarly perspectives, which mostly tend to represent the patients who participate in health 2.0 consistently as ‘empowered’ and ‘autonomous’ citizens (Lupton, M-health 239). To portray
patients of the new ‘health 2.0 era’ only as empowered impedes an understanding of healthcare as a political instrument, and the increased responsibility for the individual and public health upon their shoulders.
This chapter has discussed the impact of neoliberalism on healthcare system and the ways in which neoliberal governmentality operationalise its subjectivation techniques in order to nurture desirable population in terms of healthcare. It has been discussed that risk and empowerment are politically useful tools for neoliberal governmentality, and they will be proved to have great political significance also in the context of health 2.0. Keeping this in mind, the next chapter will dive into the discussion on health 2.0. As mentioned above, this study aims to examine the relationship between health 2.0 and neoliberal healthcare reform.
Chapter 4. Health 2.0
4.1. What is Health 2.0?The discussions so far have explained the notion of neoliberalism in healthcare and established that the techniques of risk subjectivity and empowerment are implemented as tools of neoliberal governmentality. Also, it has been shown that health 2.0 has been discussed as a technological movement that enhances patient control and power in healthcare, drawing attention to its relationship with neoliberal reformation of healthcare. In order to reveal that, this chapter will first set the starting point of the research by defining health 2.0 in relation to web 2.0.
Although still in the process of being defined, health 2.0 is generally considered a combination of two words; healthcare and web 2.0. It is a set of healthcare practices that developed along with web 2.0 technologies (Health20.org Wiki). However, the term e-health predates health 2.011 and is a broader terminology to refer to healthcare practice supported electronically (Della Mea). E-health services have existed perhaps longer than one had might imagine. Kaiser Permanente, which is a large US healthcare delivery system, has been providing an e-health service since as early as 1999. Its North Carolina division, for example, has provided online healthcare services since 1999 such as ordering refills of prescribed medicine or asking questions to advice nurses about prescription drugs or general medical concerns, and in 2001, its users were able to schedule primary care appointments in real-time (Hsu et al. 165).
Given that the term e-health denominates electronic health, one can say the term was coined in the same sense as e-commerce or e-governance, whereby information and communication technology is used in order to digitally produce, process, and store health data. In the early stage of the development of e-health, it was suggested that scholars had better not restrict the term by proposing a restrictive definition but should use it as an umbrella term so that it encompasses all the digitised process of health-related practices in both public health and more individual healthcare (Healy 11-12). Since telemedicine had been growing rapidly using analogue channels such as landline phones, the digitisation of telemedicine and tele-consultation quickly came to constitute e-health (23). This is shown in the abovementioned case of the Kaiser Permanente website that offered online scheduling and advice nurses. Further on, other e-health practices emerged such as the Electronic Health Record (EHR), online health
education, online medical information resources or digitally mediated health promotion campaigns (Healy; Tang et al.; Fox and Duggan; Neuhauser). All of these diverse aspects of digitally mediated healthcare practices were lumped together as e-health, but they had the commonalities that all were in pursuit of better efficiency and cost-effectiveness in delivering healthcare (Kluge 402), as well as the facilitation of the global accessibility of medical information (Healy 11).
Nonetheless, there emerged some scholarly movements to specialise some particular kinds of e-health practice. This was when Tim O’Reilly popularised the term ‘web 2.0’ in 2004 (Shelly and Frydenberg 9) and when e-health diversified and advanced its functionalities, taking advantage of the new participatory and interactive web 2.0 technologies like social networking, wikis, blogs, and online communities (Health20.org Wiki). Consequently, among all e-health practices, domains where web 2.0-specific technologies are applied were separated, and the term ‘health 2.0’ was newly coined by Matthew Holt. There have been more than a few attempts to clarify or delineate the definition of health 2.0. With the intention to delineate health 2.0, or similarly medicine 2.0, more comprehensively from a broader concept of e-health, a thematic analysis of the definitions offered in online sources was conducted (Hughes et al.). By examining the web appearance of health 2.0 and medicine 2.0 and how they are thematically associated with the contexts, it concluded that medicine 2.0 and health 2.0 were used in almost the same sense12. When searched on the web, health 2.0 appears to come in many different topics; patient/consumer discussion, web 2.0, healthcare professionals, social networking, change of healthcare, collaboration, and health information (Van de Belt et al.). A physician who has been and still is an active promoter of health 2.0 offered a definition I find useful in the framework of this thesis;
Health 2.0 is participatory healthcare. Enabled by information, software, and community that we collect or create, we the patients can be effective partners in our own healthcare, and we the people can participate in reshaping the health system itself. (Eytan, also qtd in Hawn)
Here the interesting points to note are ‘participatory’, ‘enabled by information’, and ‘we the people’. ‘Participatory’ is important to note because first, it is one of the fundamental features that differentiates web 2.0 from its previous form web 1.0 (O’Reilly et al. 22); and second, it will be also essential in the coming discussion of neoliberalism in health 2.0. ‘Enabled by information’ because health information as knowledge used as an ‘enabling’ factor shows how
12 HEALTH 2.0 is Matthew Holt’s registered trademark as an educational video conference (United States Patent and Trademark
Office) and Medicine 2.0 is registered as a conference trademark of JMIR(Journal of Medical Internet Research) a peer-reviewed journal. Hughes et al.’s research was published in JMIR and it maintained the term Medicine 2.0 throughout the paper even though they found that the two terms can be mutually replaceable.
the Foucaultian concept of the technology of knowledge-power is insinuated in general health 2.0 discourses. And lastly, ‘we the people’ gives a glimpse into the biopolitical reference to health 2.0 practice in that it concerns the political power of the biological bodies and their power struggle in the healthcare politics.
However, there is no generalisable consensus on the definition of health 2.0 yet (Van de Belt et al.) and the concept is being redefined constantly by researchers as the web technologies take another turn, and improve year by year. In other words, the definition, corpus and possible scenarios of health 2.0 are dependent upon the affordance of web 2.0 technologies, and therefore, critical discussions of web 2.0 must be interlocked with this study of the politics of health 2.0.
4.2. Web 2.0 as Participatory Web and Health 2.0 Platforms
When the term web 2.0 started to catch on, many online companies identified themselves with the term because of its novelty without examining what web 2.0 really means (O’Reilly et al. 18). Denouncing the companies that indiscreetly used the term web 2.0 and gave it a bad name as a mere marketing “buzzword”, Tim O’Reilly published an article to clarify what was new about web 2.0 compared with its old version web 1.0. He characterised web 2.0 as a “set of practices and principles”, not an object with boundaries (19). Among the suggested principles or prerequisites of the success of web 2.0, here are three which are most relevant for the upcoming discussion of health 2.0. First, the new web is no longer about products like browsers or software packages, but a performed service that acts as a platform which harnesses various user relationships and activities. (20). Second, web 2.0 facilitates collective intelligence through rankings, recommendation algorithm, Wiki, or blogosphere (23-26). Collective intelligence or “wisdom of crowds” (Surowiecki) is the belief that groups of individuals are able to produce more valuable knowledge than a single or a few individuals. Third, the lifeline of web 2.0 is the database and how well the web 2.0 company manages the data is inextricable from its success (27). That said, the main ideas in these three principles in fact can be conflated into one key concept that embraces the essence: “Architecture of participation” (22). The term originally meant to refer to the participatory system of open source software that needs contribution from developer-users but it was reinforced by the emergence of web 2.0 technology (O’Reilly). The core of O’Reilly’s constitution of web 2.0 is that it has in its core a technological structure of participation designed to draw productive activities from ordinary users, which will in turn enrich the platform, making the users in charge and in power (O’Reilly et al. 22). Therefore, the
notion of the architecture of participation as the core value of web 2.0 emphasises the empowerment discourse of the users.
As mentioned above, this study’s critical analysis of health 2.0 is intertwined with that of web 2.0. Thus, the dynamics of power and control in the context of web 2.0 discourse and its functionalities need to be scrutinised first. In fact, the dichotomy between web 1.0 and web 2.0 is arbitrarily constructed. Tim Berners-Lee, the originator of World Wide Web says that “the idea of the Web as interaction between people is really what the Web is. That was what it was designed to be as a collaborative space where people can interact” (Laningham). That is, web 2.0 is the latest phase of the developmental progress of the web per se, not a different entity from web 1.0. Recognising this is important in understanding the fact that it is not possible to categorise some websites as web 1.0 site and others as 2.0. Although, there are visible differences between static information-reservoir type of websites and dynamic and interactive ones like Facebook or Wikipedia. Then, from this point on, web 2.0 needs to be understood as platforms that are newly developed with rich interactive features on top of web 1.0 technologies, rather than non-web 1.0 websites.
The interactivity of web 2.0 enables users numerous things; to build social relationships with one another, upload and share multimedia data, and establish personalised experience on the web. The possibility of customisation entails a sense of user empowerment in its depth because it emphasises personal choices and control over what they want from the web and how they want to experience the web (Palmer 161). The discourse and structure of web 2.0 where users are always in power has two important connections to neoliberalism; first connection is to neoliberal epistemology and second is to production of neoliberal subjectivity. First, neoliberal epistemology is that objective and truthful knowledge can only be attained by the aggregation system of individual knowledge. Knowledge produced by individual, whether or not one is an expert or authority, is always subjective and limited beliefs, no matter how great the expertise of the single mind. Here, the aggregation system is a market-like mechanism that operates as an economy of knowledge, putting price tags to knowledge and making sure that only important and relevant information prospers and is delivered to those of concern (Hayek “Use of “16-7; Mirowski 423). It is almost populist that neoliberalists value common knowledge (in aggregation) over expert knowledge. Wikipedia is a representative web 2.0 platform that explicitly practices this neoliberal doctrine, being a system of participation that allows everyone to contribute to the achievement of the ultimate truth or whatever closest to it. Jimmy Wales, the developer of Wikipedia mentions that in an interview that “Hayek's work on price theory is
central to my own thinking about how to manage the Wikipedia project” (Mangu-Ward).
Second, web 2.0 is closely linked to the production of neoliberal subjectivity, that is, to the technologies of subjectivation of neoliberal governmentality. Social networking sites such as Facebook is a good example to show this process. As web 2.0 platforms depend on the user-generated content and constant user participation, it is actually a venue and a mediation through which users represent themselves (Langlois). It appears that the platform is the tool of alternative self-realisation of the users; however, the platform is the one that conditions the possibility of user activities and the meaning of them. The platform is, therefore a type of soft domination (Palmer 161) from which user subjectivation is enacted. User subjectivity produced by web 2.0 platforms is the subjects with morality and psychology that actively contribute to the continuation of the system of power and control; users who believe in the power of user control and choice, therefore feel the need to continuously re-define themselves by generative participation. This way, web 2.0 becomes the technology of subjectivation and reproduces neoliberal governmentality of web 2.0 (Jarrette).
Chapter 5. Methodological Framework
5.1. Overview of MethodologyHealth 2.0 is increasingly becoming the subject of studies particularly in the medical realm. What researchers in medical domains seek to study is, in general, practical issues; such as how to effectively apply health 2.0 in broader medical practice or pointing out its problems of utility such as the accuracy/trustworthiness of the information or technically addressing privacy issues in electronic health records. It appears reasonable to decide that a media studies perspective or a critical internet studies perspective is significantly missing in studies of the health 2.0 phenomenon, which this study therefore aims to provide. It was discussed in the previous chapter that health 2.0 can be an adequate source of health information which can ultimately give power to patients and users, and can become a decentralised but systematic foundation for the grass-root exercise of patient/citizen power to the traditional authorities of the medical profession. Also, as health 2.0 is the application of web 2.0 to healthcare practice, it pertains to the conception of web 2.0 as a disciplining technique of neoliberal governmentality. On top of these theoretical accounts, this study attempts to answer what kind of role health 2.0 plays in the neoliberal governmentality in healthcare and to what extent, through an empirical study on concrete samples and cases of health 2.0 platforms. This chapter will discuss the methodological framework within which this analysis critically engage with the political economy of health 2.0 practices and then present the empirical research design.
In order to demonstrate the extent to which health 2.0 is participating in neoliberal healthcare reformation, two different lines of research were conducted; first, a content analysis of the platforms’ discursive strategies in various pages and mission statements, and second, a platform study on two specific health 2.0 platforms - WebMD and PatientsLikeMe.
In fact, the analysis starts by acknowledging healthcare websites as platforms because the term is closely connected to empowerment. The term platform implies a few different meanings in different contexts like architectural, figurative or political ones, but the difference can be neutralised within their common nuance, a surface at an elevated level that facilitates activities to take place (Gillespie 350). Because a platform only stands in a place and is not an agent but only a supporter of any possible activities thereof, it denotes neutrality and progressive value (ibid.; see also Leorke 258). When a website, a web service, or mobile
application takes up the term platform as their identity, they also take up the nuance, but this does not mean that they become neutral or progressive entities per se; it means that the platforms strategically position and represent themselves as such, which is the politics of platforms (Gillespie 349). That is, the rhetoric of the platform triggers the sentiment of user empowerment and promotes the open and progressive traits of the platform. YouTube’s platform rhetoric and discursive strategies, for example, misrepresent and hide significant facets of the giant media corporation whose operation of its policies and algorithms resembles traditional one-way media with authoritative power (ibid. 359). Discursive technologies such as announcements and written policies are undoubtedly indispensable in examining the politics of platforms.
However, the politics do continue beyond the platform-user verbal communications onto the space where users actually use the functions of the platforms to participate. Here the investigation on the platforms’ interface and the functionalities becomes useful. In view of the fact that this research aims to reveal the political economy of health 2.0 and its relationship with its users, this approach, especially the case studies with WebMD and PatientsLikeMe stems from a larger context of software studies. Software studies is an interdisciplinary field of study to shed light on software using a critical approach. It offers a perspective from which to study the power dynamics on the web, between human users and the software’s technicities (Langlois et al.). The concept of technicity has multiple meanings; however Taina Bucher’s conceptualisation in terms of software studies appears to be the most relevant. She draws from Brian Massumi and Gilbert Simondon who recognised technicity as the mentality of the technology, which entails the ability and intention of technology to frame reality. As such, she defines technicity as “a mode of governmentality that pertains to technology” (Bucher 12).
More relevantly, many previous studies in medical journals on health 2.0 platforms that investigate WebMD or PatientsLikeMe are essentially centred around the content produced by the users of the platforms, such as categorising the types of communication by the users or administrators or if the folksonomy emergently developed by the users match with the medical terminologies (Frost and Massagli; Smith and Wick). Others are more interested in the practicality or medical usefulness of the platforms, asking such questions as whether the use of PatientsLikeMe induces a behavioural change in the patients or a better outcome of the treatments (Wicks et al.) Quite differently, the methodological approach developed here is in line with digital methods and platform studies. Digital methods are a set of new methodologies that study the web with an emphasis on “natively digital objects” in order to repurpose them for
