Digital Health

Critical and Cross-Disciplinary Perspectives

Deborah Lupton

• Éditeur: Routledge
• Année: 2017
• ISBN:
  9781317302193
• Édition: 1
• Sujet: Psychology
• Sous-sujet: History & Theory in Psychology

The rise of digital health technologies is, for some, a panacea to many of the medical and public health challenges we face today. This is the first book to articulate a critical response to the techno-utopian and entrepreneurial vision of the digital health phenomenon. Deborah Lupton, internationally renowned for her scholarship on the sociocultural and political aspects of medicine and health as well as digital technologies, addresses a range of compelling issues about the interests digital health represents, and its unintended effects on patients, doctors and how we conceive of public health and healthcare delivery.

Bringing together social and cultural theory with empirical research, the book challenges apolitical approaches to examine the impact new technologies have on social justice, and the implication for social and economic inequalities. Lupton considers how self-tracking devices change the patient-doctor relationship, and how the digitisation and gamification of healthcare through apps and other software affects the way we perceive and respond to our bodies. She asks which commercial interests enable different groups to communicate more widely, and how the personal data generated from digital encounters are exploited. Considering the lived experience of digital health technologies, including their emotional and sensory dimensions, the book also assesses their broader impact on medical and public health knowledges, power relations and work practices.

Relevant to students and researchers interested in medicine and public health across sociology, psychology, anthropology, new media and cultural studies, as well as policy makers and professionals in the field, this is a timely contribution on an important issue.

1

Theoretical concepts

This chapter acts as a foundation for the remainder of the book by introducing some of the theoretical concepts and approaches I find insightful for a critical approach to digital health technologies. I cover perspectives offered by the political economy approach, sociomaterialism, Foucauldian theory, the phenomenology of embodiment, and surveillance and privacy theories, explaining what each has to offer in understanding the social, cultural and political dimensions of digital health technologies. It is important to note here that, while they are presented under discrete headings, many of these perspectives overlap with or inform each other. They provide a rich basis for elucidating the often-unrecognised assumptions, discourses, beliefs and practices that give meaning to the design and use of digital technologies in medicine and public health.

The political economy approach

The political economy perspective is one of the most influential and longstanding in critical approaches to health and medicine. It has its roots in Marxian analyses of the relationship between social class, the means of production and the capitalist economic system. Also known as conflict theory, this perspective views social relations as struggles over power and involving the promotion of the interests of some social groups over others. Political economy critiques have been a central approach in the sociology of health and illness, medical anthropology, media studies and critical health psychology. Writers have drawn attention to such issues as the social determinants of health and illness states (such as social class, gender, ethnicity, age and geographical location), the establishment and maintenance of medical power, the impact and effects of globalisation on healthcare and public health, the role played by commercial entities such as Big Pharma and the biotechnology industry and the implications for social justice.

Many scholars have adopted a political economy approach to examine the nature of scientific medical authority and power and its rise in status in the twentieth century. In his influential book The Social Transformation of American Medicine (1982) for example, Starr claimed that (in the US context at least) medical authority had achieved an unparalleled high status and dominance as a profession. The concept of medicalisation has been used by Starr and others to explain the ever-increasing spread of a western medical perspective into social life and embodiment, consonant with an intensification of this profession’s power and authority.

Other influential writers on medicalisation include Irving Zola (1972) and Eliot Freidson (1970). They were developing their critiques of western medicine from the late 1960s and into the 1970s, a period in which many powerful institutions, social elites and social norms were being challenged and critiqued. They and others contended that the medical profession had acquired major influence as an institution of social control, taking on the kind of social regulation traditionally offered by the law and religion. Social and moral issues had been redefined as medical problems, requiring the knowledge of the medical profession to diagnose and treat (Baer et al. 1986; Conrad 2007; Crawford 1980; Starr 1982). Medical power and the status and authority of the medical profession (often referred to in this literature as ‘medical dominance’) were viewed as interbound with the extent of medicalisation that had occurred. Once a collection of bodily signs or behaviours are identified as symptoms of a medical condition that can be given an official diagnosis, they become ‘medicalised’ – drawn into the world of medical expertise for intervention.

There is little doubt that, in the contemporary era, the purview of western medicine has extended well beyond the surgery or hospital, penetrating into many other aspects of everyday life. Over the past quarter-century or so, biomedical innovations have contributed significantly to medicalisation. In addition to technologies such as stem cell, neurological and human genome research, digital technologies are part of these innovations. These novel technologies are part of a new bioeconomy of medicine, health and illness, leading to an intensification of focus on promoting health and preventing illness and disease using technologies, greater medical surveillance of individuals and social groups, a greater reliance on technologies for medical diagnosis and treatment and new forms of medical knowledge and transformations in human embodiment.

Clarke and colleagues (Clarke and Shim 2011; Clarke et al. 2010) employ the term ‘biomedicalisation’ to encapsulate not only the encroachment of western medicine into other areas of life, but also the growing use of technologies to treat, transform and enhance human bodies and profit from them. They also draw attention to the use of medicine and technoscience to develop technologies designed not simply to diagnose, prevent or treat illness and disease, but to optimise human bodies, promising to expand or improve people’s capacities and capabilities. These features are strongly evident in the discourses and design of digital technologies for collecting information about people so that they might improve their health, physical fitness and wellbeing.

The political economy perspective literature has further identified the ways in which the practice of scientific medicine tends to depoliticise illness and disease, representing them as individual problems rather than as socially determined, and in doing so serving the interests of the capitalist economic system. Medical discourses and practices are positioned as obfuscating the social and political causes of ill health, including socioeconomic disadvantage, by focusing instead on individual patients’ lifestyle choices (Crawford 1977, 1980; Waitzkin 2000). Thus, for example, people on very low incomes living in substandard housing are often positioned as personally to blame for their ill health (by failing to give up smoking, drinking too much alcohol, being fat or not engaging in enough exercise), drawing attention away from the broader conditions of entrenched disadvantage that may be causing their illness (such as poor housing conditions, poverty, unemployment, lack of access to healthcare or social stigmatisation). This viewpoint on health and illness has been referred to as ‘victim-blaming’ (Crawford 1977).

Exponents of the political economy perspective have also identified a power asymmetry in the doctor–patient relationship. They assert that, in the context of western medicine, medical practitioners possess authoritative knowledge and power, while patients, especially those from disadvantaged groups who lack social status and access to the type of education required to acquire medical knowledge, are not easily able to challenge the claims of their doctors (Baer et al. 1986; Conrad 1992; Crawford 1980). Critics contend, therefore, that patients’ autonomy is limited or repressed under the western system of biomedicine. They must accept the diagnoses and solutions that doctors decide for them. In response to the unequal power relations of the medical encounter, political economy critics call for more power to be invested in patients and for ‘de-medicalisation’ to occur. Critics argue that patients should be encouraged and empowered to challenge medical authority and that more attention should be directed towards the social determinants of ill health (Waitzkin 2000). This perspective underpinned many of the consumerist and patient-empowerment activism initiatives originating in the 1970s and which are still evident today (Lupton 1997a, 2012).

Writers critiquing the neoliberal political philosophy of government are the latest to adopt a political economy perspective on health and illness. Neoliberalism, emerging in western countries over the past few decades, involves a focus on the free market and a move away from state-sponsored interventions into social support systems. As a development in capitalist economic rationales, neoliberalist politics tend to focus on deregulation and individualistic solutions to social problems (McGregor 2001; Ventura 2012). Critics have noted that, under neoliberalism, ever-greater emphasis is placed on citizens taking responsibility for their own wellbeing, including educating themselves about the best strategies for self-improvement and productivity and achieving and maintaining good health (Lupton 1995a; Mooney 2012; Petersen and Lupton 1996). As part of the austerity politics adopted by many western nations in the twenty-first century in response to various economic crises and the effects of globalisation, the move towards emphasising citizens’ autonomy and self-responsibility over state intervention and support has intensified. From the political economy perspective, such strategies serve to entrench further socioeconomic disadvantage and inequalities contributing to states of health and ill health (De Vogli 2011; McGregor 2001; Mooney 2012).

When applied to analyses of the social meanings and impact of digital technologies, political economy approaches have highlighted the power differentials and the potential for creating or perpetuating socioeconomic disadvantage that are part of digital society (Fuchs and Dyer-Witheford 2013; van Deursen and van Dijk 2014). From a critical approach to digital health, analyses of the disparities in the ways in which people from different social groups and living in different geographical locations use digital health technologies are important. The potential of digital health technologies to entrench further rather than ameliorate socioeconomic disadvantage, stigmatisation and discrimination against minority groups should be uncovered.

Another key feature of digital health requiring attention is the exploitation of people’s personal digital data for commercial profit. A global knowledge economy has developed that relies in part on the generation and use of the data that are collected by digital technologies. What is constituted as knowledge and the ways in which knowledges are used for commercial, research, managerial, security and governmental purposes have become intertwined with digital forms of data generation. Indeed, it has been contended by some theorists that power now operates principally via digital modes of communication. In this context, the software, hardware devices, the digital data that they generate and the algorithms that make sense of these data have become key actors in constituting and exploiting knowledges (Amoore and Piotukh 2015; Kitchin 2014a; Lash 2007; Thrift 2005).

Despite the rhetoric of participatory democracy and sharing that characterises much discussion of technologies such as social media sites (Beer and Burrows 2010; John 2017), these media are not the open, collaborative spaces they once were. The ethos of sharing personal details and connecting and communicating with other people online originally underpinned the establishment of such social media as Facebook, Instagram and Twitter, while offering users the opportunity to find content easily online was the initial purpose of search engines like Google Search. Over the past decade or so, however, many actors have realised the economic potential of the personal details that people enter online when they use these types of technologies.

Indeed, the creators of these data are often excluded from full access to their own details, while the internet empires and smaller companies, including the plethora of data scraping, mining and profiling businesses that have sprung up to analyse digital data sets, profit from these data. They have become commodified and bent to commercial interests. As a result, new forms of power have emerged, embodied in internet empires such as Facebook, Google, Apple, Amazon and Microsoft (Andrejevic 2013, 2014; Fuchs 2011, 2014; Fuchs and Dyer-Witheford 2013; van Dijck 2013a). Digital health data are prime resources for commercialisation and commodification by these and many other corporations, including pharmaceutical and biotechnology companies and health app and wearable self-tracking device developers.

Sociomaterialism

The sociomaterial theoretical perspective focuses on the entanglements of humans and other non-human actors. This approach has been most commonly articulated in science and technology studies and, in particular, actor-network theory (Latour 2005; Law and Hassard 1999), as well as cultural studies and material anthropology (Coole and Frost 2010; Harvey and Knox 2014; Ingold 2000). Exponents of sociomaterialism emphasise the role played by material artefacts in social relations and the construction and negotiation of meaning. They acknowledge that bodies/selves are dynamic assemblages of flesh, affect, others’ bodies, objects and space/place. They draw attention to the interdependence and physicality of this relationship and accord agency to material artefacts. Objects are represented as participating in specific sets of relations, including those with other artefacts as well as people.

Space and place – the physical environments in and through which people move – are also key to sociomaterial perspectives. People are always located in place and space. Their bodies contribute to and draw from these spatial contexts as part of interactions between human and non-human actors (Ingold 2000). These spaces can have profound implications for people’s wellbeing and states of health. Some social scientists have employed the term ‘therapeutic landscapes’ (Conradson 2005; Gesler 1992) to refer to the ways in which some spaces, whether natural or built environments, work to encourage feelings of wellbeing and safety in people who are ill, mentally distressed or receiving medical care. Bell et al. (2017), for example, have researched the important role played by ‘green’ (including plants and trees) and ‘blue’ (bodies of water) environments in alleviating stress and anxiety.

Scholars adopting a sociomaterialist perspective are interested in the practices that are undertaken as part of private and communal life: how people use objects like digital technologies, incorporating them into habitual routines. They also often acknowledge the wider contexts in which these object–subject relations are configured, such as geographical location, the age, gender, ethnicity and socioeconomic status of consumers and the influence of these relations upon contexts. The concept of the ‘assemblage’, also derived from science and technology studies as well as Deleuze and Guattari’s writings (Marcus 2006), is often employed in the sociomaterialism literature as a way of acknowledging the material and non-material, the human and the non-human, the fleshly and the ideational in ever-changing configurations. The assemblage concept also emphasises the spatial aspects of the relationships between humans and non-humans: that these assemblages extend beyond flat networks of connection into three-dimensional associations.

When the sociomaterialist approach is taken up to examine humans’ relationships with technologies, it is contended that human actors (the users of these technologies) participate in configuring the meaning and uses of the technologies, just as technologies themselves enact human action, embodiment and meaning. Scholars emphasise the dynamic nature of people’s interactions with technologies in a world in which the digital is increasingly part of everyday lives, social relationships and concepts of subjectivity and embodiment, creating new practices and knowledges (Lupton 2015a, 2016a). These approaches develop a critique of digital media and technologies, acknowledging their materiality and political dimensions. They recognise the mutual interaction between human actors and the software and hardware they use.

From this perspective, digital data assemblages are configured via interactions of humans with other humans, devices and software. Digital data themselves are objects in digital data assemblages that have their own social worlds and agency. Digital data practices configure multiple identities and subjectivities that, due to the continuous and heterogeneous nature of digital data generation, are dynamic, constantly shifting and changing. This approach recognises the entanglements of personal digital data assemblages with human action. Not only are personal digital data assemblages partly comprised of information about human action, but their materialisations are also the products of human action, and these materialisations can influence future human action (Gillespie et al. 2014; Lupton 2016a, 2017a, 2017b; Marres 2012; Marres and Weltevrede 2013; Ruppert et al. 2013).

As sociomaterialist scholars argue, when people interact with digital devices they do so in ways that are structured by the affordances (or capabilities) of these devices, the codes and software that structure these affordances, the transmission technologies that send the digital data that are generated to other people or to repositories and the panoply of other actors and agencies that seek to make use of these data (Gillespie et al. 2014; Marres and Lezaun 2011). For example, search engines like Google Search (easily the most highly used search engine) use algorithms that customise searches for each individual user, based on considerations such as what other searches that person has conducted and the person’s geolocation. Search returns are also shaped by factors such as whether website developers have paid Google to promote their site and the volume of searches for the same topic by other Google users. Search engines and their algorithms, therefore, are active participants in meaning making, defining how people can access information according to their inbuilt assumptions, orderings and values (Roberge and Melançon 2015; Rogers 2013).

Digital devices that generate personal data participate in the formation of digital data assemblages, in which technologies and humans work together to create new configurations of information. Given the mobility and ubiquity of contemporary digital devices, they may be understood as lively technologies, inhabiting and accompanying us in our physical spaces and residing on or with – and indeed, as in the case of some digital medical implants, sometimes in – our bodies. These devices have become co-habitants with humans. The digital data that these devices generate may also be conceptualised as lively (Lupton 2016a, 2017a, 2017b). First, these data are generated from life itself by documenting humans’ bodies and selves. Second, as participants in the digital data economy, they are labile and fluid, open to constant repurposing by a range of actors and agencies, often in ways in which the original generators of these data have little or no knowledge. Third, these data are lively due to the advent of algorithmic authority and predictive analytics that use digital self-tracked data to make inferences and decisions about individuals and social groups. These data, therefore, have potential effects on the conduct of life and life opportunities. Fourth, by virtue of their growing value as commodities or research sources, the personal data that are derived from self-tracking practices have significant implications for livelihoods (those using these data in the data-mining, insurance and data science industries, for instance).

In its focus on materiality, the sociomaterial perspective on technologies offers valuable insights into ways of thinking about the relationship between humans and non-humans in the context of digital health. Digital health technologies directly and obviously relate to human bodies, used to deliver medical care, diagnose illnesses, monitor bodies and communicate information about bodies. However, as outlined in sociomaterial studies, any technology (digital or otherwise) is inevitably embodied as human users engage with non-human objects, place and space. Many social scientists have drawn upon the sociomaterial approach to theorise medical technologies. The term ‘materialities of care’ is sometimes employed to describe a research focus that seeks to place emphasis on how humans and non-humans interact at moments of medical (and other) caregiving: in other words, how care is a sociomaterial practice (Harbers et al. 2002; Mol 2008; van Hout et al. 2015).

Scholars adopting sociomaterial perspectives contend that humans’ enactments of technological practices facilitate modes of knowing the body and disease. Changes in medical technologies represent transformations in how bodies are conceptualised, touched, managed and visually displayed (Law and Singleton 2005; Lupton 2012; Mol 2002, 2008). Multiple enactments of bodies are generated via the different ways in which they are represented and treated (Harbers et al. 2002; Mol 2002, 2008). Patients’ knowledge of and practices related to their bodies, and therefore their body ontologies, may differ radically from those of their healthcare providers. Even among healthcare providers, different specialities can see bodies and their ills in a range of ways. This is because a human body and all its dimensions – states of health and ill health and disease, symptoms, signs, activities and movements – are messy, constantly changing a...