I have this med down to a science. (…) You also cannot drink any water after taking it until you wake up. You can take one swig of water here or there but I try not to. One thing that has worked for me is not eating or drinking anything from 9:30 until 12:30. This is a trial and error drug and I have schooled my doctor on what works. (Watson, March 9, 2015, quote slightly adapted to ensure anonymity)

As the online excerpt above suggests, the Internet has facilitated the “participatory turn” (Prainsack, 2011) in healthcare, with a plethora of online platforms and mobile health applications claimed to disrupt the traditional distribution of knowledge and power between medical professionals and people diagnosed (Dedding et al., 2011; Eysenbach et al., 2004). Yet, the term “participation” has turned out to be rather vague (Nielsen & Langstrup, 2018; Wyatt et al., 2013), and it is not clear how active such involvement with one’s health is or should be, nor whether participation reaches as far as allowing people diagnosed to contribute to the production of knowledge, and what such contributions consist of. At the same time, by affording the wider circulation of scientific controversies, the Internet has contributed to a growing public awareness about the disagreements that often exist among experts and about the conditions of uncertainty under which they make recommendations and decisions. The Internet may have thus served both to weaken the cognitive authority of “traditional” experts and to draw attention to the fact that people lacking official accreditations can also possess substantial knowledge and experience in certain domains.

These developments are linked to the rather paradoxical position that expertise has nowadays come to occupy in Western societies. One may argue that at no other time in history has expertise been so prevalent, as it has expanded and now covers areas for which no specific and substantial knowledge was previously thought necessary, ranging from child-rearing and health to interior design, lifestyle choices, and personal savings. Yet, while this suggests that expertise has become ubiquitous as well as highly valued, the identity of experts, of those who can rightfully provide authoritative answers and solutions to complex, “wicked” problems has been challenged. As a consequence, instead of something stable and well-bounded, expertise has come to mean different things to different people: it is acquired and manifested in myriad ways across different locales, it fulfills different functions, and it is importantly shaped by social, cultural, and economic factors. This raises important questions about the identity and position of those who can acquire expertise and about the ways in which they perform it, that is, about the practices, tools, and standards through which expertise is articulated.

These elements are at the core of this book, as it asks, how is expertise about bipolar disorder performed on American and French online platforms? In so doing, it focuses on how different stakeholders engage with online technologies to perform expertise about bipolar disorder and how such activities allow them to re-position themselves in relation to medical professionals. The book further investigates the individualizing or collectivity-generating effects that the Internet has in relation to the online performance of expertise about bipolar disorder, given that it is still uncertain how it shapes such performances at the level of individuals or groups, and whether it helps give rise to new configurations. By focusing on the performance of expertise about bipolar disorder on French and American digital platforms, it also considers how cultural factors shape epistemic practices. In addressing these issues, this book contributes to the fields of science and technology studies (STS), medical sociology, and media studies. A brief overview of the public and theoretical debates that have informed these particular questions and information about how they are addressed in the chapters of this book are presented below.

The processes through which one can develop expertise are domain-specific, as they involve the acquisition of particular types of knowledge and the internalization of relevant practices, norms, and values. This book focuses on mental health, where the developments sketched above have had a profound impact, and where expertise has had a particularly convoluted trajectory. This has been the case partly due to the complex and elusive nature of mental health conditions and partly to the problematic status of psychiatry in relation to medical sciences. The (relative) success of psychotropic drugs, the development and widespread use of brain neuroimaging techniques, and advances in genetics have stimulated in recent years the search for biomarkers for mental health conditions and have contributed to the proliferation and diversification of professionals working in this field. Nevertheless, mental health expertise continues to be challenged, with some critics denouncing it for pathologizing variations in average human behavior (Horwitz & Wakefield, 2007), and others condemning it for medicalizing social and political problems (Metzl, 2009). Furthermore, people diagnosed have assumed an increasingly active role in the production of knowledge about mental health, and not always in collaboration with medical professionals. Given the tremendous increase of mental health diagnoses around the world (Rose, 2018), it is more important than ever to understand how expertise about mental health is currently performed online, by whom, and through what means.

This book addresses these issues by focusing on bipolar disorder, a mental health condition which has become more prominent over the last few decades, and which is currently among the top ten causes of disability worldwide (Whiteford et al., 2013). It is a mood disorder characterized by the alternation of depressive and manic episodes and marked by episode-free intervals. While it is thought to be determined by a combination of neurological, genetic, and environmental factors, the precise causes of this condition are currently unknown. It is studied by various specialists: psychiatrists, psychologists, neuroscientists, endocrinologists, molecular biologists, epidemiologists, and so on. These professionals focus on different sites as the origin and location of this condition, they use different techniques and materials, and so they understand rather different things by bipolar disorder (Dehue, 2008; Hacking, 1995; Mol, 2002). Furthermore, the therapeutic approaches used for its management consist of diverse combinations of chemical substances, talk and behavioral therapies, as well as technological interventions, such as transcranial magnetic stimulation or vagus nerve stimulation. Dominant approaches in personalized medicine have further enhanced the complexity characterizing this field, as new subgroups have been distinguished among the people diagnosed with this condition based on whether or not they exhibited specific genetic modifications, and on their responses to certain medications. Furthermore, these perspectives shape and are shaped by the ways in which people diagnosed with this condition experience it. Bipolar disorder can therefore be seen as a “moving target” (Hacking, 1999), since it mobilizes different types of knowledge, groups of professionals, tools, standards, and methods in dynamic configurations. This makes the study of this condition relevant for research on expertise, as it can lead to a better understanding of the ways in which expertise is performed when numerous factors are involved and when a field is marked by numerous known as well as unknown unknowns.

Expertise about mental health has been traditionally performed in the hallways of medical institutions, in laboratories and clinics, and on the pages of compendia and scientific journals. However, since the late 1990s, when the Internet began to be widely adopted, the prominence of this medium as a new site for the provision of knowledge and the performance of expertise has grown (Fox et al., 2005; Hardey, 1999; Hu & Sundar, 2010). This has been particularly the case after the development of Web 2.0 technologies, such as social media platforms and wikis, where people could not only consume mental health-related information, but also actively engage in its production. As medical information has become accessible to broad audiences and as people diagnosed have started to play a more active role in the development of knowledge, some scholars thought that the Internet would contribute to more equal or balanced relationships between medical professionals and people diagnosed, what some (Kitcher, 2011; Topol, 2015) have referred to as “democratization.” While more nuanced studies have since been provided (Kivits, 2009; Versteeg & Te Molder, 2018; Ziebland & Wyke, 2012) and while people diagnosed increasingly use digital technologies for various health-related purposes, it is yet unclear what exactly the latter contribute and how these contributions are used. Nor are there many results available on the ways in which the Internet has shaped how “traditional” experts perform expertise. This study contributes to these discussions by asking how different stakeholders use the Internet to perform expertise and how democratizing such practices are. Furthermore, by combining insights from media studies on different types of online encounters and their dynamic character with sociological perspectives on the potential of personalized and precision medicine for the development of new types of communities (Akrich, 2010; Stommel & Lamerichs, 2014; Tutton & Prainsack, 2011), this book explores the possibility of new individual-group configurations in the online performance of expertise about bipolar disorder.

Despite attempts to stabilize expertise about mental health, knowledge about mental health conditions is not universal, but depends on the social, cultural, and economic contexts in which it is made manifest (Kleinman, 1988; Lakoff, 2005). Thus, how bipolar disorder is recognized, understood, and intervened upon depends on the ways in which the provision of mental healthcare is organized in any given country, and on the interpretative tools used by professionals. It is also informed by the different ways in which people learn to distinguish and make sense of problematic experiences from the incessant flow of physical and psychological stimuli and reactions that make up their lives. This raises important questions about the fate of such local and cultural markers in the online performance of expertise about bipolar disorder. To cast some light onto these aspects, this study compares the American and French perspectives on bipolar disorder and use of online technologies in mental healthcare. Given the growing popularity of online platforms among people diagnosed with mental health conditions (Carron-Arthur et al., 2016; Naslund et al., 2016), such findings are very important, because cultural and social elements may influence who feels entitled to share information, what type of information is shared, and how it is subsequently interpreted and put to use by readers. In an attempt to avoid cultural reification, the results of such comparison are presented at the level of each chapter, thus illustrating how various similarities and differences developed as an integral part of the specific analyses conducted.

Over the coming chapters we will see that the performance of expertise about bipolar disorder is not a straightforward process by which offline practices, tools, and approaches are transferred online, but involves additional skills and complex negotiations, which sometimes lead to unexpected configurations. The analysis of the empirical materials collected prompted the realization that the current theoretical perspectives on expertise do not sufficiently account for the complexity of positions that relevant stakeholders occupy and for the different types of relations they need to cultivate to successfully contribute to the development of expertise. That is why I put forward a new approach to expertise, wherein expertise is conceived as a practical achievement, realized through coordination and affective labor among stakeholders who occupy multiple and shifting positions across a complex ecosystem (discussed in more detail later in this chapter). This new approach is arrived at by engaging in dialogue with and building upon influential theories on expertise in STS. In the process, several empirical and theoretical contributions are made. Building on STS insights on users, this book contributes to medical sociology by showing that through their specific engagement with the online affordances of blogs and fora, people diagnosed with bipolar disorder move beyond the performance of lay expertise, and put forward what I call “digitally enabled hypotheses” about treatment effectiveness (Chap. 3). By bringing insights from media studies in dialogue with the recently developed field of Studies of Expertise and Experience (SEE), the concept of interactional expertise developed by Collins and Evans (2002) is expanded in this book by taking into consideration the effects of the medium through which it is performed (Chap. 5). At a time when the current dominant neoliberal model of governance encourages people to take up behaviors illustrative of narrowly conceived notions of individual autonomy and personal responsibility, we will see that some people diagnosed with bipolar disorder follow up on such encouragements and use the Internet to become successful entrepreneurs (Chap. 5), while others develop more nuanced approaches, performing solidarity and contributing to the collective development of lay expertise together with others with whom they share important similarities (Chap. 6).

In the remainder of this chapter, I discuss the details of the research upon which this book draws and introduce the following chapters. I begin, however, with an overview of the main sociological approaches to the study of expertise.

Theoretical Approaches to Expertise

Expertise means different things to different people, it is performed differently in different contexts, and it leads to different relations between people who hold expertise and those who do not as well as between those endowed with different types of expertise. While the Oxford Dictionary first mentions the term “expertise” in 1869, it was not until the 1970s that expertise started to gain considerable academic interest, thereby “reflect[ing] the growth and proliferation of professions with specialized forms of knowledge, and (…) the increased commodification of knowledge production” (McNeil, 1998: 56-57). It has thus far mainly been studied within the fields of psychology, philosophy, and sociology (Young & Muller, 2014), and such forays have been characterized by important disciplinary differences as well as significant distinctions in approach and conceptualization at the level of each discipline broadly understood (Williams et al., 1998) (for a discussion of the main approaches to expertise in psychology and philosophy, see Annex 1). Realist and constructivist approaches to expertise can be noted in all these fields. According to realist perspectives, expertise is a real and substantive skill that certain people possess. Constructivist approaches see expertise as attributional, as a qualification that experts enjoy based on it having been granted to them by others who have the prerogative to do so and which is subsequently socially recognized. Further distinctions can be derived from these two main perspectives, such as whether expertise is the property of individuals or groups, and whether it is primarily a form of theoretical or practical knowledge.

In sociology, expertise has initially been studied from the perspective of the sociology of professions, with early studies seeking to understand what accounted for the differences between occupations and professions (Kotzee, 2014). The focus has therefore been mainly on expertise as a property of groups, developed through various processes of acculturation. Initially, a realist view of expertise seems to have dominated sociological studies, with various authors showing the differences between professions and occupations to be substantial and even providing various lists of characteristics for each of them (Evetts et al., 2006). In time, however, as the constructivist approach to expertise has come to dominate (Koppl, 2010), these authors have been criticized for helping maintain the authority of influential professions, such as medicine and law (Saks, 2012). Such critique is in line with (neo)Marxist perspectives which conceive of expertise as a social construction, as a means through which influential groups retain a monopoly over certain services, with professional training, standards, and evaluations seen as mechanisms through which outsiders of these groups are denied access (Illich, 1977; Susskind & Susskind, 2015). Building upon such insights, feminist and postcolonial scholars have denounced the close relation between knowledge, authority, and power, and have shown the tenuous links between expertise, ethnicity, and gender, among others. From this perspective, rather than something real, based upon substantial ability in a given field, expertise is seen as an attribute bestowed upon certain members of society by specific institutions, but which has real and important consequences in terms of the distribution of power and privileges.

The debate regarding the contribution of STS scholars to the charges currently brought against expertise in “post-truth” discussions is still ongoing (Collins et al., 2017; Fuller, 2017; Lynch, 2017; Radder, 2018; Sismondo, 2017), but there is no doubt that they have been important proponents and advocates of the constructivist view on expertise. For instance, influential studies in the field (and in the sociology of scientific knowledge) have revealed how political and social considerations shape the production of scientific knowledge (Barnes, 1974; Bijker, 1995; Bloor, 1976; Shapin & Schaffer, 1985). In STS, currently, three main approaches can be distinguished in the study of expertise. The first highlights the substantial character of expertise and challenges the idea that public engagement means that all views are equal, represented by Collins and Evans (2002, 2007). The second conceives of expertise in terms of its institutional embedding and is put forward by Jasanoff (2004). The third understands expertise as a property of discrete networks, and it was developed by Eyal and colleagues in their study on autism (Eyal, 2013; Eyal et al., 2010; Eyal & Hart, 2010).

Seeking to determine the bases upon which members of different communities could be involved in decision-making processes at various levels depending on the type of knowledge they were endowed with, Collins and Evans (2007) put forward the Periodic Table of Expertise. In their view, expertise is characterized by three dimensions: esotericity, or the degree to which expertise is confined to a particular group; the tacit knowledge required for it; and the changes in expert performance, which trace a novice’s trajectory as s/he becomes a member of the expert group. Given the topic of this book, it has been helpful to engage with Collins and Evans’ insights, as on the one hand they have tried to open up the concept of expertise by acknowledging that people without official accreditations could also be experts in a given field, while on the other they have sought to ensure that expertise continues to designate something “real” (Collins & Evans, 2007:40). Particularly useful has been the distinction between what they call “contributory” and “interactional expertise,” which Collins and Evans consider specialist forms of expertise requiring specialist tacit knowledge. While they conceptualize contributory expertise as the ability to contribute productively to a field, interactional expertise refers to the ability to become fluent in the language of practice of a given domain, thereby being able to engage in substantial discussions about relevant matters with contributory experts in that field (I discuss at length this form of expertise in Chap. 5). Thus, Collins and Evans’ conceptualization focuses on expertise as a matter of one’s knowledge and competence.

While this approach is meant to fight relativism, it neglects the strong relational undertones of expertise, as it is acquired, maintained, and displayed in complex and often long-lasting exchanges between people with different levels of knowledge of a field and with different stakes in it. Even though Collins and Evans’ typology of expertise is fruitfully applied in this book, it is important to note some of the criticism it has received. Jasanoff (2004), for example, views expertise as embedded in practice, that is, as enacted in specific institutional settings, and she has reproached Collins and Evans for not having sufficiently taken into account the role of national and institutional cultures in shaping the development and content of expertise and the relations between experts and society at large. Jasanoff argues that socio-political elements play an important role in determining what counts as authoritative knowledge and in ensuring the obduracy of such understandings (Jasanoff, 2004), be they more or less well-founded. These elements ascribe authority and credibility, indicating who the public should trust and defer to in specific matters. Thus, according to Jasanoff (2003:393), “expertise is not merely something that is in the heads and hands of skilled persons, constituted through their deep familiarity with the problem in question, but rather […] it is something acquired, and deployed, within particular historical, political, and cultural contexts.”

Whereas Jasanoff conceives of expertise as grounded in institutions, Eyal has put forward an understanding of expertise as “a network linking together agents, devices, concepts, and institutional and spatial arrangements” (Eyal, 2013: 863). Building upon insights put forward by Foucault (1972/2010) and Rose (1992), Eyal finds it important to distinguish between expertise and experts, arguing that the study of each requires different methods and casts light upon different aspects. In this understanding, expertise is not the attribute of any one individual, but it is distributed, coming into being through exchanges between “agents” endowed with different abilities and insights yet committed to solving a common issue through similar methods. Eyal developed this theory studying how the parents of autistic children challenged the psychiatric establishment and succeeded in putting forward a different understanding of this condition and in popularizing a new therapeutic approach. These transformations were set into motion, in Eyal’s view, by a checklist that an army psychiatrist, book author, and parent of an autistic child, Bernard Rimland, provided on the back of his book for the parents of autistic children to fill in and send back to him. Thus, the checklist represented an innovative model of knowledge exchange around which the network was organized, a means which allowed new stakeholders to contribute actively to the production of knowledge about autism. His distinction between experts and expertise allows Eyal to conclude that while psychiatrists may have lost in this way some of their territory, as we will also see in Chap. 2, psychiatric expertise was in fact expanded in that it became part of a greater network, consisting of more domains and institutions and touching upon broader areas of life. Expertise as a network implies a variable level of flexibility, as it may be more or less easily rewired depending on the different stakeholder’s resources, skills, and creativity, on the credibility they enjoy, and on the necessity to develop new goals.

This conceptualization of expertise resonates with insights put forward by scholars working in different fields in response to the highly complex, dynamic, and interconnected world we live in. Important here are the insights provided by Edwards (2010), working in the field of professional learning, in reaction to the realization that people with expertise in a given field are increasingly required to work outside the boundaries of their particular institutions, to perform their expertise in collaboration with specialists from different fields, with different training, methodologies, and perspectives on the issues at hand. She argues that these realities have led to a “relational turn in expertise” (2010), as they require “an expertise which includes recognising and responding to the standpoints of others and is in addition to the specialist knowledge at the core of each distinct professional practice” (Edwards, 2010:2). Edwards thus seems to believe that such social skills have now become necessary at a more general level rather than being required only for some types of expertise (Kotzee, 2014). While it is indebted to Collins and Evans’ notion of interactional expertise, this perspective has the merit of seeking to move toward a more collective and dynamic understanding of expertise.

Edwards’ understanding of expertise resonates with a more recent contribution from education and communication studies, where Engeström (2018) has argued in favor of the need to transition to a “collaborative and transformative expertise.” Expertise derives then from common activities undertaken by different types of practitioners, who are flexible, open to new knowledge, and capable of dealing with rapidly changing environments. Particularly relevant for this book is Engeström’s (2018:1) argument that “[c]ollaborative and transformative medical expertise is continuous negotiation and hybridization of the insights of medical professionals and their patients. Without patients’ insights, accounts, and actions, medical expertise would at best be merely top-down engineering.” Rather than approaching expertise as an outstanding performance, Engeström studies it “as everyday work” by focusing on mundane situations when disturbances, breakdowns, and/or rapid transformations interrupt daily routine. What is particularly interesting about his approach is that he takes a collective activity as a unit of analysis for expertise and considers it not only a matter of internalizing authoritative knowledge, but also as conducive to new ways to produce and manifest knowledge

Building upon the relational aspect of expertise in a different way, Kotzee and Smit (2017), philosophers of science, tried to reconcile realist and constructivist views by putting forward a new conceptualization. Their starting point is the realization that both perspectives conceive of expertise as relational: in the first case, expertise is seen as consisting of the relationship between an individual and an ability; in the second, it consists of the relationship between an individual and others who acknowledge him/her as an expert in a given domain. Their solution relies on combining these elements to define expertise as one’s “ability and/or level of knowledge…that significantly surpasses [that of others]” (Kotzee & Smit, 2017:647). Given the highly specialized world in which we live, knowing whose opinion to ask for and whose advice to trust on a specific issue is highly necessary, and expertise thus understood fulfills an important public function. Nevertheless, Kotzee and Smit fail to consider a third type of relationship, namely that which people with expertise in a field develop with others who hold expertise in a different field. The analytical movement between these perspectives on expertise and the empirical materials collected for the study described in this book highlighted the fact that this concept could be further refined, especially in light of the transformations brought about by digitalization. It is to the new approach to expertise that thus emerged that I now turn.

A New Approach to Expertise

The engagement with theoretical perspectives on expertise and with the empirical materials led to a new working definition of expertise, where expertise is understood as a practical achievement, realized though coordination and affective labor among stakeholders who occupy multiple and shifting positions across a complex ecosystem. Through this definition I position myself among scholars who take a constructivist as well as practice-oriented approach to expertise in ways which I briefly describe below.

This definition is vastly indebted to Mol’s (2002) concept of enactment, as the articulation and making manifest of substantial knowledge and abilities through complex entanglements of people and tools are also essential elements in this new conceptualization. Thus, the main difference between her perspective and the one developed here may be seen as a shift in focus dictated by the societal changes and practical transformations that have taken place in recent years. Mol put forward the concept of enactment because it allowed her to make clear that the distinction between human subjects and natural objects is blurred: “like (human) subjects, (natural) objects are framed as part of events that occur and plays that are staged. If an object is real this is because it is part of a practice. It is a reality enacted” (Mol, 2002:44, emphasis in the original). I share with Mol the concern to foreground the multiplicity of the object resulting from such practices, but I add to her perspective the emphasis on the numerous, fragmented, and dynamic identities of the actors involved, to use her terminology. These were not sufficiently considered, since her account focused mainly on the professional identity of the medical professionals studied, although some intimations thereof can be noted in her discussion of the life of “patients” outside the medical setting. Enactments or performances thus grant people and objects “fragile identities” (Mol, 2002), which may shift from one site to the other.

Mol’s perspective is combined in this new understanding of expertise with the insights developed by Engeström (2018), in particular his emphasis on the collective, dynamic, and adaptable character of expertise in current times. According to Engeström (2018), expertise requires both vertical and horizontal types of movement, as knowledge in a given area needs not only to be deepened, but has to be enriched with knowledge from other related areas. By combining this perspective on the dynamic character of expertise with Jasanoff’s (2004) call to pay attention to the cultural and institutional elements that shape it, the understanding of expertise as an achievement across a complex ecosystem emerged. This conceptualization prompts the analysts to look beyond the practices they may be observing, to broaden their focus to include perspectives on the rights and obligations of the different stakeholders involved, on the prevailing cultural norms and expectations about their activities. Thus, how expertise is performed constitutes both an illustration of and a reaction to specific historical developments, to legal, political, and educational provisions and to the future visions animating the field at a given moment in time. For instance, new legal provisions about the acceptability of certain digital practices and the use of online data may enable and deter people diagnosed with bipolar disorder to share their insights and seek to engage in epistemic practices using digital technologies.

Edwards’ (2010) views on relational expertise have highlighted the necessity for different types of professionals or stakeholders to work together in order to achieve a common goal, but Engeström (2018) sets the threshold somewhat lower by foregrounding coordination rather than agreement. This means that the stakeholders involved need not undergo a substantial transformation and come to share the same understanding of the various concepts, processes, and tools involved, nor do they have to use the same standards. What is important is that they agree to suspend their differences in order to achieve a common goal (a minimal form of agreement) under conditions of uncertainty and, often, within a limited time frame. Thus, one of the advantages of “coordination” in relation to expertise is that it does not emphasize the epistemic differences between individuals in regard to a specific topic or domain, which, for instance, Kotzee and Smit’s (2017) conceptualization highlights. It foregrounds, instead, the development of more similar and equal (temporary) relations, thereby shifting the focus from people who have and do not have substantial abilities and knowledge in a field to the interactions between people who may be equally endowed, but in other domains, and who may have to work together to solve complex problems.

This perspective is further indebted to psychological and philosophical perspectives on expertise, which highlight the importance of affective reactions in relation to the development of expertise and argue that highly competent people not only come to know things differently, but also to feel differently toward them (Dreyfus & Dreyfus, 1986; Selinger & Crease, 2006). While these perspectives mainly focus on the affective responses an individual may have in relation to the practices at which s/he is (becoming) an expert, the online interactions that will be described in this book highlight the numerous emotions that arise and need to be managed when different people interact and share insights online. These emotions played an important role in the development of new knowledge online, as interactions among people diagnosed could be short or longer-lasting, superficial, or more substantial, depending on the emotions that dominated such encounters, which shaped, in turn, the insights that were shared. Thus, to perform lay expertise online, some people diagnosed had to overcome their fright or reservations regarding computers and the Internet, they had to try to make themselves likeable or intriguing enough for others to interact with them, and they had to care for others, to respect their views and experiences and to help them develop more positive emotions. This means that expertise is not solely a matter of intellectual and cognitive processes, but that affective labor plays an important part in its development, as it underlies people’s efforts to coordinate with others.

The focus on the multiple and shifting positions that stakeholders can occupy in relation to the development of expertise is indebted to feminist theories (Harding, 2004), which have emphasized the different meanings an issue can acquire depending on the perspective of those who look upon it, on the identity and position they occupy within a certain social order. While Richmond (2017) has suggested to approach expertise by considering the mediation work individuals or groups at the periphery are forced to undertake in order to (effectively) communicate with those at the center, her discussion of Lugones’ concept of “mobile positioning” has been particularly useful here. Thus, by paying attention to the multiple identities one inhabits, one may find ways to escape, obfuscate, resist, or transform the norms and regulations of the communities one is part of, and one may develop a more critical perspective on them. This informed the realization that one and the same stakeholder may occupy different positions within the ecosystem where expertise is developed and that these different positionings may need to be both “stirred” and managed at different moments throughout this process. For instance, in the field of mental health, numerous researchers, and medical professionals are also patients or carers and fulfill executive functions whereby they contribute to the decision-making regarding the allocation of research funds.

The new insights that can be acquired by applying this new understanding of expertise will be illustrated throughout the findings described in each chapter. Since expertise is a practical achievement in a complex ecosystem, the important role of historical developments and future visions in animating the epistemic efforts of various stakeholders will be brought to the fore in Chap. 2, while the ways in which expertise is shaped by dominant social values will be discussed in Chap. 6. Chapters 3 and 4 will highlight two dimensions of coordination, both of which are mediated in different ways by the design and affordances of digital platforms. Whereas Chap. 3 focuses on the material and epistemic relations that one and the same stakeholder needs to develop and maintain across different digital spaces to successfully perform expertise, Chap. 4 shows that digital technologies inform coordination in substantial ways by allowing for the coming together of disparate efforts undertaken by many, sometimes fleeting, contributors. The multiple and shifting positions that stakeholders can occupy in relation to expertise will be brought to the fore across Chaps. 4 and 5, as it will be shown how some individuals diagnosed with bipolar disorder manage to position themselves as experts by experience, representatives of people diagnosed with bipolar disorder, patients, advisors, and successful entrepreneurs. As we will see, it is their successful orchestration of these multiple identities and their ability to shift the focus from one to the other, depending on the character of their interactions and of their goals, that have enabled them to become highly influential. While affective practices could be encountered across all the online exchanges studied, they will come to the fore in Chap. 6, where it will be argued that affective labor shapes the development of expertise as it contributes to the development of new collectives and facilitates the exchange of intensely intimate experiences about bipolar disorder.

As it must have become clear by now, the concept of performance, first introduced by Goffman (1959/1990), was used to investigate expertise about bipolar disorder on digital platforms. According to Goffman, social interactions represent performances through which individuals seek to produce desired impressions on their audiences by engaging in various practices of self-revelation and concealment. Even though some scholars (Barad, 2003) have understood performance in a very limited way, as something akin to engaging in an activity, whereas others (Mol, 2002) have preferred the notion of “enactment” which did not carry within it the implicit distinction between a real self/“persona” or inner identity versus a “mask” or external identity, this concept is used here in a broader sense, which highlights the important coordination required for a particular version of reality (Hafermalz et al., 2016) to be brought into being. Given the focus on practices, materialities, and events that it allows for, performance was deemed appropriate in view of the new conceptualization of expertise put forward. This way, the impact of the Internet and its multifaceted character on epistemic practices can be brought to the fore, as expertise about bipolar disorder can be approached as being distributed across different online platforms, and shaped by the different technologies available on them. Before moving on to that, however, there are still a few elements which need to be introduced, namely bipolar disorder and the role of the Internet in the study of expertise about this condition, to which I now turn.

Bipolar Disorder

Mental health conditions are the result of complex interactions between individuals with a certain biological make-up and their physical and social environment. Symptoms of what would later be known as bipolar disorder were first presented in the 1850s to the Académie de Medicine in Paris by Baillarger, who called it “folie à double forme” (dual form insanity), and Falret, who referred to it as “folie circulaire” (circular insanity) (Angst & Sellaro, 2000). Both scientists agreed that this condition had a terrible prognosis, and Falret postulated that it had a strong genetic basis. In the 1900s, Kraepelin was also pessimistic about the outcome of patients exhibiting such symptoms, but observed that they also experienced intervals when no “abnormal” functioning could be detected. He used the term “manic-depressive psychosis” to distinguish this mood condition from “precocious madness,” which later became known as schizophrenia (Angst & Marneros, 2001). The term “manic-depressive illness” was coined in the 1950s, which roughly coincides with the period when lithium salts started their successful, still ongoing career as treatment for this condition, following a discovery by Australian psychiatrist John Cade (Healy, 2008). In the 1980s, the name was replaced by “bipolar disorder,” thought to be less stigmatizing, but this change continues to be debated, as many medical professionals and people diagnosed consider the former denomination to convey the character of this condition more appropriately.

Currently, the presumed causes of bipolar disorder represent a mixture of neurologic, genetic, and environmental factors, and this condition is managed through a combination of medication, therapy, and counseling. Because of the similarity in symptoms with major depression, bipolar disorder remains difficult to diagnose correctly, and often many years (5–12) and numerous encounters with various mental health professionals are necessary. In the Diagnostic and Statistical Manual of Mental Disorders (DSM-5, 2013), this condition is coded as bipolar single manic, bipolar manic, bipolar depressed, bipolar mixed, each category containing several subtypes. The International Classification of Disease and Health Related Problems (ICD-10, 2010) groups conditions based on their relatedness to each other, so different forms of bipolar disorder are spread under the headings of various types of mental health conditions. An important distinction both in regard to diagnostic difficulties but also in relation to treatment lies between the types bipolar I disorder and bipolar II disorder. These two types differ mainly in the severity of the manic episodes experienced. Whereas bipolar I disorder involves severe manic episodes, lasting for several days and at times requiring hospitalization, those diagnosed with bipolar II disorder experience hypomanic states rather than full-blown manic episodes (Grande et al., 2016). Even though the enormous increase in people diagnosed is often ascribed to improved diagnostic tools, it may also be due to a positive re-evaluation of this condition. Martin (2009), for example, argues this is the result of a close connection between the values of capitalism and some of the traits associated with manic episodes: creativity, passion, dedication, and intense activity. In contrast, others have explained the growing number of people diagnosed with this condition by arguing that the values of capitalism lead to stress, anxiety, and depression (Hidaka, 2012), while yet others have linked this increase to tendencies to medicalize social issues (Esposito & Perez, 2014) and to pathologize variations in human experiences (Horwitz & Wakefield, 2007; Scott, 2006).

Bipolar disorder has also been affected by recent developments in personalized and precision medicine, which provide visions of medical interventions tailored to the specific needs and circumstances of individuals (Rose, 2018). Doubts about the scientific character of expertise about mental health have led professionals to embrace perspectives and procedures which have deeply anchored this condition in biology, in processes which could be identified, measured, and acted upon through targeted approaches. As such, in the aftermath of the Human Genome Project (1990–2003), numerous research projects (Alda et al., 2005; Cruceanu et al., 2009; MacQueen et al., 2001) have been undertaken, which have sought to identity the phenotypes and genetic markers underlying bipolar disorder, the predictive factors of response among different (sub)groups of people diagnosed, and new drug targets. At present, however, bipolar disorder seems to be characterized by too great genetic and phenotypic heterogeneity for these insights to be very helpful (Rose, 2018). Furthermore, since treatment response in many of these studies was measured with different instruments, the translation of these new insights into clinical practice is likely to take some time and to require collaboration and intense efforts among a very broad range of professionals, including not only medical specialists but also engineers and computer scientists.

Even though DSM-5 and ICD-10 largely determine how mental health conditions are diagnosed around the world, expertise about them is shaped by the social and cultural context of its performance. To better understand the role these elements play, this book focuses on expertise about bipolar disorder in the US and France. These countries were chosen because their approach to mental healthcare is marked by a diverse range of similarities and differences, which can better highlight the role the Internet plays in mediating them. Thus, whereas both countries are in the process of reforming their mental healthcare system, there remain notable differences between them regarding the diagnosis and management of mental health conditions. In France, mental disorders are diagnosed based on ICD-10 and a psychosocial model of disease remains prevalent, whereas in the US diagnosis is based on DSM-5 and the focus is on the biological markers of this condition. There are also important differences regarding the number of people diagnosed with bipolar disorder among the two countries, as the US registers the highest number of people diagnosed in the world, with an incidence of 4%, whereas in France, the rate is significantly lower, with 1.5–2% of the population being diagnosed.Footnote 1 While bipolar disorder is generally thought to affect both genders equally, the results of the most recent French national survey suggest that bipolar disorder is starting to become a gendered condition here, as the statistics indicate that there are 1.6 times more women diagnosed than men, the difference concerning specifically bipolar disorder type II (Vaugrente, 2018). In both countries, however, stigma remains rampant, despite the efforts undertaken by various advocacy movements, which will be briefly discussed in the next chapter. At the same time, both the US and France share an interest in using telemedicine and digital technologies for the provision of mental healthcare. Since the Internet is an important carrier of social and cultural markers (Miller & Slater, 2000; Orgad, 2005), studying how expertise about bipolar disorder is performed on digital platforms by contributors from both countries is therefore highly relevant, and it is this aspect that I now briefly discuss.

Studying Expertise About Bipolar Disorder Online

While the Internet is intensively used these days for health-related purposes, it continues to divide opinions about the ways in which it shapes (mental) healthcare, and about the benefits and disadvantages of its use for different stakeholders. Thus, its proponents, many of which are government officials, argue that it may help solve the current crisis in mental healthcare, brought about by a growing number of people diagnosed and lower budget funds available for this sector, as it may enable the provision of good quality and cost-effective care. These optimistic views have acquired renewed impetus with the move toward personalized and precision medicine and with the hopes generated by big data analytics. These have changed the ways in which health and disease are conceptualized and have emphasized the need for (self)surveillance and for collecting highly diverse types of data both from people diagnosed and from those not (yet) diagnosed (Hogle, 2016; Prainsack, 2018). In this context, active forms of patienthood have been encouraged not only by public stakeholders, but also by commercial actors, which have started to become more involved in healthcare (Sharon, 2016), as we shall see in the next chapter.

Critics (Brown & Baker, 2012; Lupton, 2018; Neff, 2013) have argued, however, that such approaches constitute strategies through which governments place greater responsibilities upon citizens in a context where social provisions are cut and where a market logic is increasingly used to guide the provision of mental healthcare. Some commentators have also criticized the users’ engagement with digital technologies as a form of free labor (Mitchell & Waldby, 2010; Terranova, 2000; Waldby & Cooper, 2008), where people are encouraged to constantly monitor themselves in pervasive and invasive ways, but are required to give up ownership over their data and any claims over potential profits that can be made from them. Others have also worried about the different ways in which such data may be used and how they may affect the individual users of such technologies and the prescription practices of medical professionals. Such concerns are particularly well-founded in the US, where Section 2713 of the Affordable Care Act stipulates the establishment of “guidelines to permit a health insurance plan to use value-based insurance design” (National Conference of State Legislatures, 2018). Thus, while some believe the Internet can be harnessed to help solve numerous problems in mental healthcare, others worry about the effects of online practices, about the ways in which people diagnosed understand themselves and their condition, and about the ways in which the Internet can shape relations between them and medical professionals. This book contributes toward a better understanding of these aspects by engaging with two recurrent ideas about the Internet’s potential, namely its ability to democratize and to help transmit local and cultural norms.

In the early days of the Internet, some medical sociologists and media scholars thought that it would contribute to the democratization of relations between medical professionals and their patients (Hardey, 1999; Poster, 2001) by allowing people diagnosed to access medical information previously reserved strictly for medical professionals, by enabling them to learn about alternative approaches to mental health, and by facilitating their contributions to epistemic practices. In the meantime, more nuanced studies (Nettleton & Burrows, 2003; Wyatt et al., 2016) have been published, which have problematized the Internet’s democratizing potential, highlighting the multifaceted character of this medium, and the heterogeneity of people who search for and contribute to health-related information online. Scholars have also argued that the Internet leads to new forms of inequality engendered by various algorithms, including those of search engines, which determine the visibility of digital platforms (Bishop, 2018; Hargittai, 2007; Pasquinelli, 2009).

The resources available to people are thus not equally distributed, as online communication skills, familiarity with various technologies, and the size and impact of on- and offline (professional) networks can differ considerably. Furthermore, despite their increasing popularity, interactive digital platforms have not replaced non-interactive websites, but co-exist with them. The choice of an interactive or non-interactive platform is determined not only by the goals and preferences of users, but also by their resources and position. Thus, important institutions with a generous budget can invest in their platform, but need to shape the information provided in view of their values. In contrast, smaller stakeholders may need to settle for a platform they can afford or select a design that will attract many visitors, and attune their message to the (prospective) sponsors' preferences. These choices may affect a platform’s index score with a search engine, which can have profound consequences, as studies about people’s online search behavior indicate that users often do not look beyond the first few results pages (Bar-Ilan et al., 2006; Höchstötter & Lewandowski, 2009). Thus, the type of platform selected and its design significantly influence how information is provided, and the types of knowledge made available.

In the early days, the Internet was also seen by some scholars as an instrument of globalization, as they believed that it would help bring about cultural homogeneity through the seamless flow of information among people from all corners of the world and through the subsequent effacement of local practices in favor of cosmopolitan approaches (Featherstone et al., 1995). After 2000, however, a growing number of anthropologists and media scholars have drawn attention to the specific contexts in which online contributions are made, and have argued that social and cultural norms importantly shape people’s online behaviors (Ardichvili et al., 2006; Fox et al., 2005; Miller & Slater, 2000). Yet little is currently known about the ways in which local and cultural markers shape online exchanges about mental health, and this is one of the aspects that this study addresses by comparing how expertise about bipolar disorder is performed on American and French platforms. In so doing, it focuses on the ways in which online contributors from these countries use different digital platforms and the affordances available on them to determine how local perspectives shape people’s orientations toward bipolar disorder online. More details about the methodological approaches used are provided below.

Methods and Sources

Methodologically, this book draws upon qualitative empirical material of two types: data collected from different digital platforms on bipolar disorder and articles from medical journals. Digital platforms are spaces which are socially created through interactions and practices between numerous stakeholders. They can be endowed with different affordances, and require different levels of skills and resources by their users (Drucker, 2011). Affordances denote mechanisms which are conceptually relational and which place different opportunities and constraints on both users and artifacts (Davis & Chouinard, 2016). This means that not all platforms and functions embedded on them are equally accessible to all users. Online contributions are therefore informed not only by the availability or absence of various functions, such as the ability to comment and to upload texts, graphs, images, and videos, but also by the users’ skills, preferences, and attitudes toward these technologies as well as by what they hope to achieve through their sharing practices. The advent of Web 2.0 has heightened the profile of interactive platforms, which are characterized by a high media convergence (Herring, 2012), meaning that information is increasingly provided through a combination of text with other visual, audio, and video materials. Yet, such platforms exist in an environment that they share with non-interactive platforms, which are less dynamic, complex, and open. Non-interactive platforms dedicated to mental health generally include websites belonging to influential institutions, be they governmental bodies, or patient organizations, which importantly shape the provision of treatment and care for people diagnosed with bipolar disorder. While the access to the information they provide is public, the contributors are selected by each particular institution and are generally medical professionals.

In order to understand how the Internet shapes the performance of expertise about bipolar disorder, both interactive and non-interactive online platforms were selected. The selection was based upon a novel methodological approach, as I aimed to reproduce the behavior of average Internet users and conducted queries using the index of the search engine Google as a relevance indicator. A list was thus made of the online platforms mentioned on the first 30 pages of results. This list was subsequently filtered to exclude online platforms in other languages than English and French, to eliminate multiple pointers to the same item and websites where the content was not focused on bipolar disorder or which were not free to access, but required registration or payment. Since language is not a reliable indicator, the domain of each platform was subsequently checked and only the online platforms were retained where American and French official institutions were mentioned. This was done to ensure that online data were collected from contributors in these two countries. Blogs and fora which had been established for less than one year at the moment when the selection took place (September 2014), which did not allow the information available on their platforms to be used for research purposes, and which had few contributors (<10) were also filtered out.

The table below gives an overview of the online platforms from which data were collected:

List of selected platforms for data collection

Platform name and country

Platform type

Platform management

National Institute of Mental Health—US

Non-interactive

Governmental agency

Bipolar Burble—US

Blog

Person diagnosed

Bipolar Happens!—US

Blog

Person diagnosed

Bp Hope—US

Forum

People diagnosed

La Haute Autorité de Santé (HAS)—France

Non-interactive

Governmental agency

Doctissimo—France

Forum

People diagnosed; mediated by medical professionals

Le Forum des Bipotes—France

Forum

People diagnosed

Data were collected at different moments between June 2014 and September 2018, because online contributors often change their mind about the online reactions they provide and amend them (multiple times) or remove them altogether at later moments. By collecting the data from the same platforms in different periods, it was possible to identify instances when comments had been edited or removed by the people who had written them and thus to respect their wishes by removing them from the data collected. These data were supplemented by the collection of newspaper and digital articles and communications (Chap. 2), relevant medical articles (Chap. 4), and online interviews with two highly influential bloggers on bipolar disorder (Chap. 5). To understand how expertise about bipolar disorder was performed on these different online platforms and how meaning and culture were (re)produced online, qualitative methods which could provide “deep knowledge” of such dynamic and situated practices (Markham, 2016) were used. The specific methods used in each chapter vary, but they include computer-mediated discourse analysis (Chap. 4), thematic analysis (Chaps. 3, 5, and 6), and conversation analysis (Chap. 6) adapted to online contexts.

The approval of the Ethical Review Committee Inner City (ERCIC) of Maastricht University was sought and obtained on April 6, 2016. It was not feasible to obtain informed consent from all the online contributors who posted information on the platforms from which data were. This was partly due to their sheer number and partly due to the fact that the contributions collected span roughly 10 years, a period in which many people who shared their insights may have stopped using these platforms or may have changed their usernames. Since data were collected from platforms with a public character, the study upon which this book is based meets current ethical guidelines for online research. For instance, according to the British Psychological Society (BPS, 2013:7), “where it is reasonable to argue that there is likely no perception and/or expectation of privacy (or where scientific/social value and/or research validity considerations are deemed to justify undisclosed observation), use of research data without gaining valid consent may be justifiable.” To protect the online contributors from any possible harm, the data were anonymized by replacing the usernames with pseudonyms, by making slight alterations to the dates of the comments directly cited, and by removing the names of specific items or medications. Even though more substantial changes to the content of each of these comments would have further diminished the chances of re-identification, a decision was made against this approach. This decision was informed by the consideration that only the authors of the online contributions are entitled to operate changes to them. Furthermore, even slight modifications to their content may have led to shifts in meaning and possible interpretations, which was deemed particularly undesirable, given that this book’s aim is to show how online contributors diagnosed with bipolar disorder engage in knowledge practices. All quotes are, therefore, provided verbatim. Given their public standing, an exception to anonymization was made in the case of the two bloggers discussed in Chap. 5. Both bloggers were contacted and they are referred to in this book according to their own indication.

Outline of the Remaining Chapters

Chapter 2 traces the development of expertise about mental health from the early days of the asylum to the hopes and anxieties that are currently generated by the (upcoming) use of digital and AI-based technologies in the provision of mental healthcare. Based on a review of relevant historical and sociological works, it highlights the trajectory that expertise about mental health has undergone from the focus on heredity in the nineteenth century to the more recent embrace of genetics. In so doing, it engages with the jurisdictional struggles that emerged between psychiatry, psychology, and other disciplines, with the development of self-help and support groups in the US and France and with the precarious state that characterizes the provision of mental healthcare in both countries these days. By building an arch between the past and future of expertise about mental healthcare, this chapter provides rich contextual information which is important to better understand the online practices discussed in the remainder of the book and the similarities and differences among French and American contributors that will be described.

Chapter 3 describes how expertise about bipolar disorder is performed by The National Institute of Mental Health (NIMH) in the US and La Haute Autorité de Santé (HAS) in France. The analysis helps us understand how expertise is performed online by influential stakeholders, which possess substantial resources and have numerous options to choose from in terms of digital practices. The information NIMH and HAS put forward online about bipolar disorder was analyzed by combining insights from Latour (1987) and media studies with a dramaturgical perspective (Goffman, 1959/1990). This approach allowed for a better understanding of the material and epistemic relations that these institutions had to develop and manage online to successfully perform expertise. I argue that both stakeholders are rather reluctant Internet users, who perform expertise in a highly conservative fashion, which in turn allows them to articulate the knowledge currently available on this condition as stable and precise. While both institutions use similar performative techniques, they adapt them to subtly redefine bipolar disorder in ways which seem better aligned to the priorities characterizing their national health system and their institutional prerogatives and goals.

Chapter 4 traces how authoritative medical knowledge, such as that described above, permeates different areas of society, and becomes amenable to multiple usages and interpretations. It explores the Internet’s democratizing potential by considering how people diagnosed with bipolar disorder re-appropriate medical perspectives and combine them with personal insights to contribute to the development of new knowledge through dynamic and even fleeting online exchanges on blogs and fora. This chapter is based on two types of sources: articles published by scientists in medical journals and data collected from blogs and fora, where people diagnosed shared their treatment experiences. I use de Certeau’s theory (1988) of creative tactics in everyday life to analyze the online data, as it allows to move beyond domination and resistance as characterizing the main positions people diagnosed can develop in relation to dominant forms of knowledge, and to identify more subtle ways through which they can make their agency manifest. The analysis thus indicates that through their online interactions, people diagnosed move beyond the performance of lay expertise and collectively generate what I call “digitally informed hypotheses” in areas where the currently available medical knowledge on the effects and side effects of medications is insufficient. In so doing, the Internet affords individuals diagnosed a voice, yet one which can have a broad epistemic impact only when heard and taken seriously by researchers.

Chapter 5 shows that the Internet does not always favor the powerful, but this still does not mean that it has a democratizing effect. It traces the online activities of two bloggers diagnosed with bipolar disorder using the concept of interactional expertise developed by Collins and Evans (2002). This chapter argues that by combining medical knowledge with their situated experiences, and by utilizing the affordances of blogs, these bloggers have become a new type of stakeholder, what I call “online expert mediators.” This chapter makes a theoretical contribution, as the notion of interactional expertise is extended by taking into consideration the role of the medium through which interactional expertise is displayed and by showing that its bi-directional character is more substantial than Collins and Evans initially envisaged. The analysis further indicates that the high standing of online expert mediators is not the result of a subversive use of the Internet, but of a dynamic alliance with “traditional” experts and of a strong media presence.

Chapter 6 builds upon recent calls made by medical sociologists and STS scholars to focus on the relational character of illness, thereby exploring the Internet’s potential for solidarity. It shows that mental health-related online exchanges enable people diagnosed with bipolar disorder to perform solidarity. This has important epistemic consequences, because online solidaristic practices allow individuals both to perform lay expertise and to contribute to its collective development, as new knowledge is distilled from the personal experiences and insights that are brought together. Such activities are underpinned by affective labor, which facilitates the emergence of digital biocommunities and the development of lay expertise. Based on Prainsack and Buyx (2017)’s concept of solidarity and Gershon’s (2010) notion of idioms of practice, the notion of digital biocommunities denotes a new type of subgroup, developed not only upon a common diagnosis, life circumstances, experiences, perspectives, and values, but also on similar engagements with the technologies of fora. By putting forward this concept, I highlight that despite an increased focus on individualization in mental healthcare, people diagnosed experience their condition in relational terms, even in regard to lived, embodied experiences.

Chapter 7 brings together the main findings and conclusions that have emerged from the study of the online performance of expertise about bipolar disorder described in this book. By building upon the theoretical perspectives discussed in this introductory chapter and by combining them with insights acquired from the empirical chapters, a new perspective on expertise was put forward. This new approach conceives of expertise as a practical and collective achievement realized through coordination and affective labor among stakeholders who occupy multiple and shifting positions within a complex ecosystem. This approach seeks to do justice to the important ways in which cultural and institutional factors shape expertise, while acknowledging the agency and complex identities of relevant stakeholders, who can be in turn or at the same time individuals diagnosed with a condition, professionals, scientific contributors, and information mediators. I discuss the significance of the main findings by considering them within the context of broader transformations that digital technologies have contributed to in processes of knowledge production, circulation, and evaluation, and which were already touched upon in Chap. 2. I argue that we need to move beyond rather simplistic approaches which see the Internet either as a quick technological fix or a postmodern version of Pandora’s box.