My new book: Risk, 2nd edition

My latest book was published recently. It is the second, fully revised edition of  Risk, a volume I contributed to Routledge’s Key Ideas in Sociology series. The first edition appeared in 1999, so it was interesting to see how much had changed in the theoretical and empirical landscape of the sociology of risk in the ensuing years.

In the first edition of Risk, I identified three major theoretical perspectives on risk in social and cultural theory. The first approach draws upon the work of Mary Douglas to articulate the ‘cultural/symbolic’ perspective on risk. The second approach is that of the ‘risk society’ perspective, based on the writings of Ulrich Beck and Anthony Giddens. The third approach covered is that of the ‘governmentality’ perspective, which builds on Michel Foucault’s work.

No major theoretical perspectives have emerged since the first edition, but there have been some extensions of these established perspectives. The second edition adds discussion of new work by Beck and Giddens and governmentality writers in relation to the newly emerging threats of the twenty-first century, such as climate change, extreme weather events, terrorism and global financial crises. Beck’s recent writings on cosmopolitanism and world risk society are incorporated, as are those by Giddens on fundamentalism in relation to terrorism, and climate change politics.

New thoughts by governmentality scholars such as Mitchell Dean on precautionary risk are also covered. Precautionary risk is an approach that has recently emerged in neoliberal societies to deal with apparently incalculable and unpredictable risks. This strategy attempts to deal with great uncertainty about how to calculate and manage catastrophic risks, to govern the ungovernable threats of this new century that challenge neoliberalist ideals of progress, rational management and control.

As well as these theoretical directions, the book also includes discussion of many empirical research studies on risk published since the first edition, undertaken by researchers in the UK, USA, Canada, Australia and Scandinavia. One change in the second edition is that I place more of a focus on the notion of risk and suffering, an aspect that did not receive much attention in the first edition. Scholarly and policy representations of risk often tend not to acknowledge the emotional dimensions  of feeling threatened by risk: the anxiety, fear and despair that  may accompany such experiences.

The new edition also includes discussion of the writings of my colleague and co-author John Tulloch (see Tulloch and Lupton, 2003), who was a victim of the 7 July 2005 London bombings. John has written about his unique position as a well-known scholar of risk and as someone who became the ‘face of the London bombings’ in the news media. He found himself in the difficult position of being used by Tony Blair’s government to support its anti-terrorist legislation even though he trenchantly opposed it. As such, John was able to critique political attempts to contain and control risk and media conventions of portraying risk.

Cashing in on patients’ experiences: the commodification of patient support and opinion websites

English: The PatientsLikeMe Profile of Stephen Heywood, brother of the co-founders of the company, who was diagnosed with ALS when he was 29 years old. This profile describes his experience with the disease including his functional rating scale, treatments, symptoms, breathing capacity, and weight. (Photo credit: Wikipedia)

As part of the digital health phenomenon, a plethora of interactive digital platforms have been established in recent years to elicit lay people’s experiences of illness, medical treatments and healthcare. These include such sites as PatientsLikeMe, Smart Patients, Health Unlocked, CarePages and Cure Together, as well as many condition-specific sites.

The function of these platforms, as expressed on the main pages of their websites, is to provide the tools and forums whereby patients and caregivers, and in cases medical practitioners, can share their experiences with others, benefit from the support and knowledge of other contributors, comment on healthcare providers and contribute to large aggregated data archives as part of developing better medical treatments and services and conducting medical research. However what may not always be readily apparent to the users of these platforms are the growing commercial uses by some of the platforms’ owners of the archives of the data they contribute.

I have just published a working paper (available here) in which I discuss what I term ‘the digital patient experience economy’. This term relates to patients’ online accounts and details of their medical conditions and their ratings and opinions of healthcare providers and institutions having become valued not only for the support and information they offer to other patients but also for the increasing commercial value they have for other actors. These data have become treated as another form of digital intellectual property, owned not by the patients themselves but by the companies that encourage patients to upload their experiences that accumulate in the data archives they own and over which they have control. While some of these platforms are not-for-profit and operate solely as forums for patients to interact with each other or to report their experiences with healthcare providers (for example, Patient Opinion), a growing number have been established by companies seeking to profit from the harvesting of these data and on-selling them to their clients.

Lay people’s experiences and opinions as they are expressed in digital media forums, with all the suffering, hope, despair, frustration, anger and joy that are often integral aspects of coping or living with a medical condition or surgical procedures, have become commercial properties for market exchange. They are not offered and nor do they receive financial compensation for providing their experiences. The value they derive is non-commercial, while the exchange value of the data they upload is accumulated by the for-profit companies that provide the platforms for patients to share their experiences or trawl the web to harvest the data and render it into a form that is valuable for commercial entities.

As I argue in the working paper, patients may benefit in many ways from the affective labour in which they engage as part of contributing to these websites. Research suggests that many patients appreciate the greater access to information about their conditions and the emotional support, opportunity to express themselves, feeling part of a community and greater sense of control over their illness that they may gain from their participation in such forums. They may further gain satisfaction from contributing to scientific research, the production of better understanding of their condition or the provision of facilities or improved healthcare that may benefit themselves or others with their condition.

However many contributors may not be aware of the ways in which the data they upload may be harvested for commercial purposes. The overt rhetoric of the for-profit platforms on their main pages emphasises patient support and the democratic sharing of data for the good of all. The information about how these data are monetised for the benefit of the platforms’ owners is often buried in ‘terms and conditions’ or ‘privacy policy’ pages that people who join as members may not bother to read or may not fully understand.

The use value of the data produced by contributors is restricted by the limits imposed by the platform they are using. Indeed it can be extremely difficult for people to retrieve for their own purposes the data they upload to patient experience platforms, enter as part of their electronic medical records or that are generated as part of their participation in clinical trials. Contributors’ efforts to collate their own small data aggregates may be frustrated in the face of the interests of commercialised big data: hence the recent development of the Small Data website, designed to assist them to gain access to their data.

We know little about to what extent the people who contribute to these sites are aware of how their data are used by third parties, commercially or otherwise; how they feel about this use if they are aware of it; how they experience the sites as users; and to what extent they may wish to gain access to their own data for their own purposes. I argue, therefore, that patients’ opinions and illness narratives may be expressed in more diverse and accessible forums than ever before, but simultaneously they have become exploited in novel ways in the era of digital health.

Theorising mHealth and the quantified self

I have published several posts on this blog now about mHealth and the quantified self (see them here). I have also written two scholarly publications that have been published in academic journals discussing this topic in greater depth. In the first article I looked at how theories of surveillance society and the cyborg body could be applied to understanding the use of digital health technologies as they are used for health promotion, and also discussed privacy, intimacy and ethical issues (see here for details of the first article, the full version of which is open access).

The latest article is entitled ‘Quantifying the body: monitoring, performing and measuring health in the age of mHealth technologies’, published in Critical Public Health (see here for details). It builds upon the previous article by bringing in discussion of the quantified self movement. Here is the abstract:

Mobile and wearable digital devices and related Web 2.0 apps and social media tools offer new ways of monitoring, measuring and representing the human body. They are capable of producing detailed biometric data that may be collected by individuals and then shared with others. Health promoters, like many medical and public health professionals, have been eager to seize the opportunities they perceive for using what have been dubbed ‘mHealth’ (‘mobile health’) technologies to promote the public’s health. These technologies are also increasingly used by lay people outside the professional sphere of health promotion as part of voluntary self-tracking strategies (referred to by some as ‘the quantified self’). In response to the overwhelmingly positive approach evident in the health promotion and self-tracking literature, this article adopts a critical sociological perspective to identify some of the social and cultural meanings of self-tracking practices via digital devices. Following an overview of the technologies currently available for such purposes I move on to discuss how they may contribute to concepts of health, embodiment and identity. The discussion focuses particularly on how these technologies promote techno-utopian, enhancement and healthist discourses and the privileging of the visual and the metric in representing the body via these devices.

My current research is moving from a focus on health promotion to the construction of patienthood in digital health discourses. I’m looking at how patients are being encouraged to engage in self-monitoring and self-care activities to reduce healthcare costs, and the commodification of patients’ accounts of their experiences of illness and healthcare on social media platforms designed to elicit patient opinion.