Last year I guest-edited a special issue of the open-access sociology journal Societies that focused on critical perspectives on digital health technologies. The collection includes my editorial and another article I contributed (on the topic of apps as sociocultural artefacts), as well as eight other articles from scholars based in the UK, Australia, Finland, the USA and Sweden. Individual contributions may be accessed on the journal’s website here, and now the whole collection is available as an open access book PDF (or can be purchased as a hard copy), both available here.
The following outline of the special issue/book’s contents, an edited excerpt taken from my editorial, provides an overview of its contents.
The articles in this special issue build on a well-established literature in sociology, science and technology studies and media and cultural studies that has addressed the use of digital technologies in health and medicine… Several of these topics are taken up in the articles published in this special issue. All the authors use social and cultural theory to provide insights into the tacit assumptions, cultural meanings and experiences of digital health technologies. The articles cover a range of digital health technologies: devices used for the self-tracking of body metrics (Ruckenstein; Till; Rich and Miah; Lupton); social media platforms for discussing patients’ experiences of chronic disease (Sosnowy) and experiences of pregnancy and early motherhood (Johnson); health and medical apps (Till; Johnson; Christie and Verran; Lupton); telehealthcare systems (Hendy, Chrysanthaki and Barlow); and a digital public health surveillance system (Cakici and Sanches). While some articles focus on globalised digital media (Cakici and Sanches; Rich and Miah; Till; Lupton), others engage more specifically with a range of sociocultural groups, contexts and locations. These include Aboriginal people living in a remote region of Australia (Christie and Verran) and Australian mothers in urban Sydney (Johnson) as well as research participants in Helsinki, Finland (Ruckenstein), the United States (Sosnowy) and England (Hendy, Chrysanthaki and Barlow).
Understandings and experiences of selfhood and embodiment as they are generated and experienced via digital health devices are central preoccupations in the articles by Ruckenstein, Rich and Miah, Till, Lupton, Sosnowy and Johnson. Ruckenstein’s study of self-trackers found that they often conceptualised their bodies and their physical activities in different ways when these were being monitored and rendered into digital data. The data that were generated by these devices proved to be motivational and to give value to some activities (like housework) that otherwise lacked value or new meaning to functions such as sleep (which when digitised and quantified became viewed as a competence). Ruckenstein found that the digital data tended to be invested with greater validity than were other indicators of bodily wellbeing or activity, such as the individual’s physical sensations.
All of the above authors comment on the ways in which digital health devices such as wearable self-tracking devices, social media platforms, apps and patient support websites work as disciplinary tools. They invite users to conform to the ideals of healthism (privileging good health above other priorities) and the responsible self-management and self-monitoring of one’s health and body, including avoiding exposure to risk. Rich and Miah use the concept of “public pedagogy” to describe the socio-political dimensions of digital health technologies as they are employed to educate people about their bodies and promote self-management. As Johnson notes, for women who are pregnant or have the care of young children, this sphere of responsibility is extended to the bodies of others: the foetus or child. And as Till’s article emphasises, when employees are “encouraged” to engage in self-tracking, the ethos of responsibility extends from personal objectives to those of employers.
Ruckenstein, Till and Sosnowy also highlight the digital labour involved for people who engage with social media or self-tracking apps as part of their personal health or fitness practices. Sosnowy’s interviews with women with multiple sclerosis who blog about their condition emphasise the work involved in such engagement as an “active patient”. Till’s analysis of digital exercise self-tracking points to the appropriations of people’s labour by other actors for commercial reasons.
The article by Hendy, Chrysanthaki and Barlow moves in a somewhat different direction. Using ethnographic cases studies, they look at the managerial issues involved with implementing telehealthcare in English social and health care organisations. Their focus, therefore, is not on the recipients or targets of digital health technologies but rather those who are attempting to institute programs as part of their work as managers. These authors’ contribution highlights the messiness of introducing new systems and practices into large organisations, and the resistances that may emerge on the part of both workers and the targets of telehealthcare programs. Cakici and Sanches’ article also takes an organisational perspective in addressing a European Commission co-funded project directed at syndromic surveillance, or the use of secondary sources to detect outbreaks and patterns in diseases and medical conditions. Digital data are increasingly being use as part of syndromic surveillance: Google Flu Trends is one such example. Cakici and Sanches’ analysis highlights the role played by human decision-making and the affordances of digital technologies in structuring what kinds of data are retrieved for syndromic surveillance and how they are interpreted.
While there are as yet few detailed ethnographic accounts of how people are implementing, adopting or resisting contemporary digital health technologies, there are even fewer that investigate the use of these technologies by members of cultural groups outside the global North. The article by Christie and Verran takes a much-needed diversion from perspectives on white, privileged groups to Aboriginal people living in a remote part of Australia. As they argue, the concepts on health, illness and the body that are held by this cultural group differ radically from the tacit assumptions that are invested in mainstream health and medical apps. Any app that is developed to assist in health literacy that is targeted at this group must incorporate culturally-appropriate modes of communication: positioning people within their cultural and kinship networks of sociality, for example, rather than representing them as atomised actors.
The articles collected here in this special issue have gone some way in offering a critical response to digital health technologies, but they represent only a beginning. Many more compelling topics remain to be investigated. These include research into the ways in which lay people and healthcare professionals are using (or resisting the use) of social media, apps and self-monitoring devices for medicine and health-related purposes; the implications for medical power and the doctor-patient relationship; how citizen science and citizen sensing are operating in the public health domain; the development of new digital health technologies; the implications of big data and data harvesting in medicine and healthcare; the spreading out of health-related self-tracking practices into many social domains; the unintended consequences and ethical aspects of digital technology use and their implications for social justice; and data security and privacy issues.