Digital Health and Technological Promise

A Sociological Inquiry

Alan Petersen

• Editorial: Routledge
• Año: 2018
• ISBN:
  9781351780391
• Edición: 1
• Categoría: Betriebswirtschaft
• Categoría: Pharma-, Biotechnologie- & Gesundheitsindustrie

What is 'digital health'? And, what are its implications for medicine and healthcare, and for individual citizens and society? 'Digital health' is of growing interest to policymakers, clinicians, and businesses. It is underpinned by promise and optimism, with predictions that digital technologies and related innovations will soon 'transform' medicine and healthcare, and enable individuals to better manage their own health and risk and to receive a more 'personalised' treatment and care.

Offering a sociological perspective, this book critically examines the dimensions and implications of 'digital health', a term that is often ill defined, but signifies the promise of technology to 'empower' individuals and improve their lives as well as generating efficiencies and wealth. The chapters explore relevant sociological concepts and theories; changing conceptions of the self-evident in citizens' growing use of wearables, online behaviours and patient activism; changes in medical practices, especially precision (or 'personalised') medicine and growing reliance on 'big data' and algorithm-driven decisions; the character of the digital healthcare economy; and the perils of 'digital health'.

It is argued that, for various reasons, including the way digital technologies are designed and operate and the influence of big technology companies and other interests seeking to monetise citizens' data, 'digital health' is unlikely to deliver much of what is promised. Citizens' use of digital technologies is likened to a Faustian bargain: citizens are likely to surrender something of far greater value (their personal data) than what they obtain from their use. However, growing data activism and calls for 'algorithmic accountability' highlight the potential for citizens to create alternative futures—ones oriented to fulfilling human needs rather than techno-utopian visions.

This ground-breaking book will provide an invaluable resource for those seeking to understand the socio-cultural and politico-economic implications of digital health.

1

Digital health’, technology and promise

‘Disruptive’, ‘revolutionary’ and ‘transformative’ are terms often used by policymakers, health authorities, scientists and media commentators to describe the predicted implications of the development and applications of digital technologies in the near future. Health, medicine and healthcare, like other spheres of life, are anticipated to undergo rapid, profound change as a consequence of digitalization. This includes changes in how illness and wellness are understood, how medical research is undertaken, how healthcare practitioners are taught, how prevention, treatment and care are undertaken, and how related data is produced, stored and shared. Such change, it is argued, or simply assumed, will occur and be for the better. This generally implies more effective and efficient healthcare systems, more engaged and ‘empowered’ citizens, and greatly improved standards of community health and wellbeing. But are these promises likely to be fulfilled? If so, who will likely benefit and who will be disadvantaged? What are the implications of the growing application of digital technologies in health, medicine and healthcare for our conceptions of self, society and citizenship?

This book offers a sociological perspective on the shifting discourses and practices of ‘digital health’ (sometimes called ‘e-health’ or ‘health informatics’)—a field underpinned by promise and optimism, but accompanied by relatively little critical assessment of its social, economic, political and personal implications. As I explain, the question of what constitutes or could constitute digital health is far from settled. The term has been used variously in different countries and contexts to designate diverse phenomena. However, regardless of how it is defined, digital health tends to be viewed positively, conveying a conception of how health, medicine and healthcare should be practised, and of the roles and responsibilities of citizens as either ‘consumers’ of health; producers of information, products or services; or providers of treatments and care. Digital health designates an imagined medicine and healthcare that is predictive, ‘personalized’, timely, efficient and effective, and that has the potential, through related innovations, to contribute to economic growth. As I argue in Chapter 3, digital health designates a kind of healthcare that is increasingly big data-driven, using artificial intelligence (AI), algorithms and machine learning to undertake healthcare decisions. Digital technologies are seen as the means to facilitate self-responsibility in health by ensuring that citizens play an active role in their own risk management, health monitoring and care and thereby contribute to reducing burgeoning healthcare costs, associated in particular with the rising number of ageing-related chronic conditions. Predictions that personalized (or, increasingly, ‘precision’) medicine will be the future of healthcare intensified in the wake of the public announcement of the mapping of the human genome in 2000 (Chapter 3). However, recent developments, especially digital technologies, including AI, machine learning and data science, have led many scientists, policymakers and other influential authorities to suggest that this future may be much closer than many people have envisaged (Chapter 3). Consequently, governments have increased efforts to enhance ‘digital literacy’ in the population, to develop the necessary physical infrastructure and institutions, and to support programs of related research and development.

More and more governments, businesses and professional bodies have committed to advancing the use of digital technologies in medicine and healthcare. At the international level, many countries and jurisdictions have developed policies related to digital health and have invested in related infrastructure and personnel. Many refer to increasing the scale of digital transformation to enable the delivery of new models of healthcare (e.g. Queensland Government 2017: 27). Further, in policy and program statements, ‘patient engagement’ and ‘community partnerships’ figure prominently. In 2005, digital health received endorsement from the World Health Organization (WHO) which adopted a resolution on ‘eHealth’ that urged Member States to ‘consider drawing up a longer-term strategic plan for developing and implementing eHealth services in the various fields of the health sector’ (WHO, 2005). It defined e-health as ‘the cost-effective and secure use of information and communications technologies in support of health and health-related fields, including health-care services, health surveillance, health literature, and health education, knowledge and research’ (ibid.). The resolution called for an ‘appropriate legal framework and infrastructure’, and encouraged ‘public and private partnerships’ and efforts to ‘reach communities, including vulnerable groups’. The WHO was also keen for Member States to establish and implement national electronic public health information systems and enhance the capacity for surveillance and rapid response to disease and public health emergencies (ibid.). Recent evidence suggests that Member States have responded positively to this call. A WHO survey undertaken in 2015 found that 58 percent of the 125 Member States that responded (of 194 in total) have national policies for e-health (WHO, 2016: 12). Since 2000, the number of countries with e-health policies has increased dramatically (ibid.: 14).

In Australia, the Australian Digital Health Agency was launched in 2016 with the aim of ‘putting data and technology safely to work for patients, consumers and the healthcare professionals who look after them’ (Australian Digital Health Agency, n.d.a). In a National Digital Health Strategy statement, released in August 2017, it was announced that from 2018 Australians would have to choose to opt out from the national My Health Record, which would increase participation from 20 percent to 98 percent of the population—making it ‘the highest participation rate in a national health record system in the world’ (ibid.: 10) (Chapter 4). The Agency identified a number of priority outcomes, including making health information ‘available whenever and wherever it is needed’, enabling health information to be ‘exchanged securely’, encouraging ‘digitally-enabled models of care that drive improved accessibility, quality, safety and efficiency’, and nurturing a ‘thriving digital health industry’ (ibid.: 5–7). The Agency sees both health consumers and providers as being able to access their health information ‘at any time online and through mobile apps’ (ibid.: 5). This kind of constant connection is central to the emerging future medicine and healthcare that is seen as personalized, timely, effective and more cost-efficient than currently offered (Chapter 3). Other countries likewise have made efforts to advance digital health (or eHealth) and invested in related programs of research and infrastructure, focusing on areas such as the establishment or updating of electronic health records, ‘connected care’, wearable technologies, big data analytics and predictive screening. The word connected figures prominently in policy statements and suggests the forging of links between citizens, such as patients and their families and health professionals, and between these different communities and various technologies.

This book explores the character of these purported connections and what they mean or may mean in the future for social relations, roles and citizen responsibilities. However, rapid developments in fields such as robotics and AI, and predictions that such technologies will replace or complement existing labour (Chapter 2), make it difficult to anticipate where digitalization is heading and how it will impact on different groups and societies more generally. With suggestions that the ‘convergence’ of ‘technologies’ will enable new ways of thinking about health and undertaking healthcare, it has become increasingly difficult to envisage how developments will play out in coming years; however, I discuss some trends and their likely implications (Chapter 5). As I explain in Chapter 2, there have been many predictions over the past five decades or more about automation and robotization and the question needs to be asked, is this time different? (Ford, 2016: 29). And, if so, to what extent, and how exactly is this difference manifest?

The book critically appraises a number of common claims about digital health and explores the socio-cultural, politico-economic and personal implications of the enactment of policies, programs and practices associated with digitally based or enabled health, medicine and healthcare. My starting premise is recognition that technologies are always already social. That is, what are taken to be technologies, and the ways in which they are conceived, developed and applied, inescapably reflects wider socio-political processes, including the priorities and values of those with particular investments in the future. Further, no matter where and how applied, technologies have socio-political consequences—shaping conceptions of society and social relations, and impacting unevenly on different sections of the population. The term socio-technical is often used to describe this inextricable link and complex interaction between technology and society.

As with many if not most new and emergent fields of technology, digital technologies are widely seen to hold great promise, which has underpinned the high hopes and expectations held by governments, businesses, professionals, investors and many lay citizens. As sociologists and science and technology studies scholars have argued, discourses of promise, hope and expectation play a major role in technological development, as seen in fields such as genetics, nanotechnologies and stem cell treatments (Brown, 2003; Nightingale and Martin, 2004). They are also play a crucial role in marketing healthcare products and services, as I will show. Such discourses may be described as performative in the sense of mobilizing actions, including investment decisions, in ways oriented to bringing about particular desired futures. Economists and economic sociologists increasingly have recognized the implications of such discourses in influencing decision-making in markets and whole economies (e.g. MacKenzie et al., 2007). The field of behavioural economics, which is attracting growing attention among scholars and policymakers, acknowledges the role of perceptions on economic activity. The rise of the ‘digital economy’, including the growth of direct-to-consumer advertising of diverse products and services and clinically unproven medical treatments, has arguably brought to the fore consideration of how representations may shape thinking and action; for example, how advertisers’ promissory claims—namely optimistic stories about what products or services will offer—serve to manipulate and deceive consumers (Akerlof and Shiller, 2015). However, as histories of technological developments make clear, events rarely play out in ways imagined. Performativity may fail to produce what is promised—or ‘misfire’ as Butler (2010) puts it—and futures may unfold in ways unforeseen. Gartner’s (2016) ‘hype cycle’, which charts the key phases of a technology’s life cycle, involving peaks of inflated expectations and subsequent troughs of disillusionment that follow when promises fail to materialize, has characterized the development of many if not most fields of technological development. Gartner’s hype cycle provides the basis for a whole new field of business of technology research and advice.

This book critically interrogates the claim that digital health will necessarily produce the outcomes or effects described in policy statements and in media depictions. In fact, the history of technology development suggests that, for various reasons, digital health is unlikely to materialize in ways envisaged. There are likely to be unforeseen and unintended consequences of technologies, which will be developed or used in ways unimagined by their designers and proponents (Chapter 5). However, the social and personal implications of efforts to enact digital health policies and programs are likely to be far reaching. Belief is a powerful motivator of human actions and has been shown to shape policies and programs in various technological fields in the past—such as genetics, nanotechnologies and stem cell treatments—all fields that I have researched over the past twenty years. As I argue, regardless of whether digital health evolves in ways imagined, related policies and programs are profoundly refashioning conceptions of self, society and citizenship, and impacting on related notions of truth, privacy, trust, rights and responsibilities.

That digitalization in general is reshaping conceptions of self, society and citizenship is evident in various areas of discourse and practice, including:

• interpersonal communications, where it has been noted that conversation is increasingly being substituted by electronic connection (Turkle, 2015);
• civil society and politics, where established forms of civic engagement and political activism are to some extent being replaced by ‘slacktivism’ (that is, citizens gaining a sense of doing something without making a substantial commitment) (Penny, 2017);
• business and policy making, with heightened concerns about cybersecurity (Lucas, 2015) including the hacking of personal (e.g. health) information (Chokshi, 2016);
• media and community debates, including about ‘fake news’ (Price, 2016), Facebook’s and Google’s tracking of users’ web browsing activity (Solon, 2017), and ‘sexploitation’ and revenge porn; and
• patient activism, where individuals are playing an active role in shaping their futures by using the internet and social media to forge communities, share stories, raise funds for research, lobby for changes in policies, and gain access to clinically unproven treatments otherwise unavailable to them (Petersen et al., 2017).

Citizens’ capacity to create their own content using the internet and social media—sometimes dubbed Web 2.0—has been associated with the purported decline of trust in mainstream media, as well as the failure of media commentators and electoral pundits to predict events such as Brexit in the UK and the outcome of the US elections (Sunstein, 2018). Individuals no longer necessarily defer to credentialed experts and expertise and established notions of truth. This has led some media and academic commentators to suggest that contemporary societies have moved to a ‘post-truth’ and ‘post-trust’ era (Baird, 2016).

In 2016, Oxford Dictionaries announced its Word of the Year 2016 was ‘post-truth’—which it defined as ‘relating to or denoting circumstances in which objective facts are less influential in shaping public opinion than appeals to emotion and personal belief’ (Oxford Dictionaries, 2016). In its announcement, Oxford Dictionaries noted ‘the word spiking in frequency this year in the context of the Brexit referendum in the UK and the presidential election in the US’, and that ‘Post-truth has gone from being a peripheral term to being a mainstay in political commentary, now often being used by major publications without the need for clarification or definition in their headlines.’ (ibid.) However, while growing digital media use has been associated with the erosion of truth, these same media provide the source of the data that is increasingly mined for various purposes via the use of tools such as Google Trends, Google AdWords and Google Ngram. In his book Everybody Lies: What the Internet Can Tell Us About Who We Really Are, Stephens-Davidowitz (2017) argues that these tools can reveal citizens’ innermost secrets and information on such matters as racism, sexual practices, political intentions, sporting potential, and emotional and physical health. Stephen-Davidowitz’s bold prediction is that the resulting big data will create a ‘social science revolution’ (ibid.: 273).

In the following chapters, I explore how digital media are shaping notions of fact, evidence, truth and trustworthiness, and of the role of emotions and personal beliefs in this context, and how the blurring of the line between truth and falsity and fact and fiction serves, intentionally or not, the interests of those seeking to profit from the application of digital technologies in health and healthcare. I step back from current debates about the purported disruptions or transformations wrought by digitalization, whether to the economy, healthcare or interpersonal communications, to take a critical perspective on digital health and its representations and implications. Specifically, I examine the socio-cultural and politico-economic contexts within which digital health has become salient, and in which digital technologies are ascribed value and find applications. I explore questions such as: What conceptions of self and citizenship are assumed by digital health initiatives? Will efforts to realize visions of digitally enabled or enhanced medicine and healthcare reinforce existing inequalities, or create new ones? What personal and interpersonal imperatives are implied by digital technologies and the development of related infrastructures such as electronic health record systems? How is knowledge being shaped by the growing reliance on data analytics for policies and decisions in medicine and healthcare?

A significant question for sociology is how digitalization is shaping the discipline itself and its ways of understanding the social. Sociologists frequently describe their discipline in terms of its capacity to debunk or demystify taken-for-granted assumptions about society. However, we are living in an era in which ‘the social’ itself and established ways of understanding are increasingly questioned. There are many schools of thought about the proper focus of sociology, many of which can be drawn upon to help make sense of digital health and its consequences; however, the discipline as a whole has been indelibly shaped by modernist conceptions of society mostly forged before the era of the internet and social media. As with other social science disciplines, such as anthropology and economics, sociology is largely oriented to documenting and explaining past events, and thus constitutes a retrospective rather than a prospective form of knowledge that offers insights into events as they unfold or are likely to unfold. Although encompassing a diverse array of perspectives, founded on different theories of knowledge, sociology is generally diagnostic in its orientation to the social, with a strong attachment to suffering; that is, analysing the conditions that give rise to inequalities, that limit human agency, that give rise to disease, that shorten lifespans, and so on. In this orientation, the discipline has failed to capture the social dynamics of knowledge production and the ever-shifting relations between knowledge and power (Miyazaki, 2004). For sociologists, shifting the focus from generating retrospective knowledge to developing prospective knowledge, and considering what this might entail for their research and action agendas, is challenging both conceptually and methodologically. What does such a shift entail in practice? What methods are appropriate for generating such knowledge? And, what might the implications be for social action and intervention?

While there is no straightforward answer to any of the above questions, I suggest that the rudiments for a new kind of sociology—one that is reflexive (self-questioning), and attentive to history and biography—is to be found in the work of seminal figures such as Karl Marx, Pierre Bourdieu and Michel Foucault, and their followers. Also useful in this regard are the writings of theorists such as Marshall McLuhan, Erich Fromm and Manuel Castells, who have written about and offered predictions in regard to technological developments, especially electronic communication technologies, and their implications (Chapter 2). Contemporary sociology, I would suggest, has often been inattentive to history, despite its purported founders being either historians (e.g. Max Weber) or using historical methods in their work (Karl Marx). However, a socio-historical approach is urgently needed to make sense of digital and other technological developments, especially in understanding how questions of power and politics shape decisions. It is here that the work of the French philosopher and historian Michel Foucault is especially useful.

As Foucault observed many years ago, and long before the rise of the internet, there is an extricable link between knowledge and power, and discourse and practice. Using a particular historical perspective and method, namely genealogy, applied to areas such as medicine, crime and punishment, and sexuality, he revealed how discourses and practices reflect the...