Four talks in Europe, June 2017

I’ll be giving four talks in Europe in June this year. Here are the details and the links to the events.

Feeling data – the role of touch in data sense

I have had an article accepted for publication in a special issue on haptic media in New Media & Society. In the article, I discuss the ways in which people’s engagements with their personal digital data can be facilitated with the use of touch, by generating three-dimensional materialisations of their data.

The introduction to the article is below. The PDF of the entire author’s accepted version is here: Lupton 2017 Feeling data – touch and data sense.

People’s encounters and entanglements with the personal digital data that they generate is a new and compelling area of research interest in this age of the ascendancy of digital data. The emergence of novel modes of generating digital data about humans and their activities and movements has the potential for new ways of learning about and conceptualising bodies, selves and social relations. The experience of everyday life in many parts of the world is now increasingly datafied – rendered into digital data forms. People’s interactions online, their use of mobile and wearable devices, and other ‘smart’ objects and their movements in sensor-embedded spaces all generate multiple and constant flows of digital data, often about intensely personal actions and preferences, social relationships, and bodily functions and movements. They are encouraged to take the opportunity to view and reflect on this information and use it to optimise their lives, improve their health and wellbeing, contribute to their memories or achieve self-knowledge (Lupton, 2016b; 2016a; Nafus and Sherman, 2014; Selke, 2016). In response to the continual data streams and traces generated about them, people are learning to come to terms with how their personal information is generated and what meanings and value it offers them. They are now called upon to engage with a variety of forms of information about themselves and to confront the complexities of how these data are used by others.

Responding to personal data is a highly sensory experience, involving people to engage in complex negotiations between assessing the information they receive from their embodied senses and that generated from digital devices. The ways in which their personal details are translated from digital data into material form are important to people’s sensory engagements with their data. Most discussions of personal digital data materialisations have focused on two-dimensional visual renderings: data visualisations that are primarily designed to be looked at. This article is intended as a contribution towards understanding the sensory dimensions of personal digital data, with a particular focus on the haptic. I explore the topic of how personal digital data and their circulations can be made more perceptible and therefore interpretable to people with the use of three-dimensional materialisations that invite not only viewing but also touching and handling, and in some cases, the senses of hearing, taste and smell as well. I argue that these forms of data materialisation are potentially integral to new modes of understanding and incorporating personal data into everyday life, living with and alongside these data.

The discussion is structured into several parts. In the first part, I review some of the relevant literature on human embodiment, the senses and digital technologies, establishing the theoretical basis that is further developed in the article. This is followed by a discussion of how the ontologies of personal digital data may be theorised. I then introduce the notion of data sense, drawing attention to the sensory dimensions of how people interpret their data. I then discuss the ways in which personal digital data can be fabricated into three-dimensional forms using 3D printing technologies – data physicalisations – so that they can be experienced and responded to in multisensory ways. I provide examples of objects created from personal digital data that can be handled, displayed as decorative artefacts, worn on the body as jewellery and even eaten. Finally, I address the politics of personal data and their materialisations. The concluding comments raise some directions for further research emerging from this discussion.

My publications in 2016

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Books

Lupton, D. (2016) The Quantified Self: A Sociology of Self-Tracking. Cambridge: Polity Press.

Edited special issues

Digitised health, medicine and risk’, Health, Risk & Society (volume 17, issue 7-8), 2016 (my editorial for this issue is available here).

Book chapters

Lupton, D. (2016) Digitized health promotion: risk and personal responsibility for health in the Web 2.0 era. In Davis, J. and Gonzalez, A. M. (eds), To Fix or To Heal: Patient Care, Public Health, and the Limits of Biomedicine. New York: New York University Press, pp. 152—76. (A preprint version is available here.)

Lupton, D. (2016) Digital risk society. In Zinn, J., Burgess, A. and Alemanno, A. (eds), The Routledge Handbook of Risk Studies. London: Routledge, pp. 301—9. (A preprint version is available here.)

Lupton, D. (2016) You are your data: self-tracking practices and concepts of data. In Selke, Stefan (ed.), Lifelogging: Digital Self-Tracking: Between Disruptive Technology and Cultural Change. Zurich: Springer, pp. 61—79. (A preprint version is available here.)

Lupton, D. (2016) Digital health technologies and digital data: new ways of monitoring, measuring and commodifying human bodies. In Olleros, F. X. and Zhegu, M. (eds), Research Handbook of Digital Transformations. New York: Edward Elgar, pp. 84—102. (A preprint version is available here.)

Lupton, D. (2016) Personal data practices in the age of lively data. In Daniels, J., Gregory, K. and McMillan Cottom, T. (eds), Digital Sociologies. London: Policy Press, 335—350. (A preprint version is available here.)

Lupton, D. (2016) ‘Mastering your fertility’: the digitised reproductive citizen. In McCosker, A., Vivienne, S. and Johns, A. (eds), Negotiating Digital Citizenship: Control, Contest and Culture. London: Rowman and Littlefield, pp. 81—93. (A preprint version is available here.)

Journal articles

Thomas, G.M. and Lupton, D. (2016) Threats and thrills: pregnancy apps, risk and consumption. Health, Risk & Society, 17(7-8), 495—509.

Lupton, D. (2016) Digital companion species and eating data: implications for theorising digital data-human assemblages. Big Data & Society, 3(1), online, available at http://bds.sagepub.com/content/3/1/2053951715619947

Lupton, D. (2016) Towards critical health studies: reflections on two decades of research in Health and the way forward. Health, 20(1), 49—61.

Michael, M. and Lupton, D. (2016) Toward a manifesto for ‘a public understanding of big data’. Public Understanding of Science, 25(1), 104—116.

Lupton, D. (2016) The diverse domains of quantified selves: self-tracking modes and dataveillance. Economy & Society, 45(1), 101—122.

Lupton, D. (2016) The use and value of digital media information for pregnancy and early motherhood: a focus group study. BMC Pregnancy and Childbirth, 16(171), online, available at http://bmcpregnancychildbirth.biomedcentral.com/articles/10.1186/s12884-016-0971-

Lupton, D., Pedersen, S. and Thomas, G.M. (2016) Parenting and digital media: from the early web to contemporary digital society. Sociology Compass, 10(8), 730—743.

Lupton, D. and Pedersen, S. (2016) An Australian survey of women’s use of pregnancy and parenting apps. Women and Birth, 29, 368—375.

Sumartojo, S., Pink, S., Lupton, D. and Heyes Labond, C. (2016) The affective intensities of datafied space. Emotion, Space and Society, 21, 33—40.

Pedersen, S. and Lupton, D. (2016) ‘What are you feeling right now?’ Communities of maternal feeling on Mumsnet. Emotion, Space & Society, online ahead of print: http://www.sciencedirect.com/science/article/pii/S175545861630010X

Lupton, D. (2016) Digital media and body weight, shape, and size: an introduction and review. Fat Studies, online ahead of print: http://www.tandfonline.com/doi/abs/10.1080/21604851.2017.1243392

Lupton, D. (2016) Lively devices, lively data and lively leisure studies. Leisure Studies, 35(6), 709—711.

 

 

Affective atmospheres and digital health

I have just submitted an essay for the special issue of Digital Health I am editing on the senses and digital health. In the essay I outline how the concept of affective atmospheres can be used to understand how and why people use or fail to take up digital health technologies, with a particular focus on the sensory and affective dimensions of these responses. The preprint version is available here, and the abstract is below.

The concept of affective atmospheres has recently emerged in cultural geography to refer to the feelings that are generated by the interactions and movements of human and nonhuman actors in specific spaces and places. Affective atmospheres can have profound effects on the ways in which people think and feel about and sense the spaces they inhabit and through which they move and the other actors in those spaces. Thus far, very little research has adopted this concept to explore the ways in which digital health technologies are used. As part of seeking to redress this lacuna, in this essay I draw on previously published literature on affective atmospheres to demonstrate and explain the implications of this scholarship for future theoretical and empirical scholarship about digital health practices that pays attention to their affective and sensory elements. The article is structured into six parts. The first part outlines the concepts and research practices underpinning affective atmospheres scholarship. In the second part, I review some of the research that looks at place, space and mobilities in relation to affective atmospheres. In the third part I go on to focus more specifically on the affective atmospheres of medical encounters, and then move on to digital technology use in the fourth part. I then address in the fifth part some relevant scholarship on digital health technologies. I end the essay with some reflections of directions in which future research taking up the concept of affective atmospheres in the context of digital health technologies can go. The key research question that these topics all work towards is that asking ‘How does digital health feel?’

Fat, thin and fit bodies in digital media

 

I have just completed an introduction for a special issue of the journal Fat Studies on digital media and body weight, shape and size. Here’s an edited excerpt from the introduction. (Update: the introduction has now been published, and can be viewed here.)

Numerous researchers have called attention to the ways in which often very negative portrayals of fat embodiment circulate in the popular media. Despite the growing presence of attempts to counter these portrayals, online representations of fat bodies that seek to challenge accepted norms and engage in fat activist politics continue to be far outnumbered by those that continue to stigmatize and shame fat people and portray thin bodies as more desirable, healthy and attractive. A content analysis of the representation of “obesity” on YouTube (Yoo and Kim 2012) found that highly negative representations of fat people were common, as were those that attributed personal responsibility for body weight (such as showing fat people eating unhealthy food) and made fun of fat people. Another study of YouTube videos using the search term “fat” (Hussin et al. 2011) revealed that many highly-viewed videos included content that devalued fat people. Men were targeted for fat stigmatization twice as often as women, and white people were the targets far more frequently than other ethnic or racial groups. The antagonists engaging in active shaming or vilification of fat people were also overwhelmingly white men.

My own search for the term “fat people” on YouTube in September 2016 returned many top-ranked videos in which fat people are held up to ridicule and scorn. These bore such titles as “Fat People Fails,” featuring fat people falling over, breaking furniture or otherwise publicly humiliating themselves as well as “The Top Fattest People in the World,” and “Fat People Cringe,” all featuring fat bodies in the style of the freak show. These videos all have millions of views. A Google search for “fat memes” similarly found memes that not only stigmatize fat bodies but are blatantly abusive and often cruel. Just some examples I came across include unflattering images of fat people with texts such as “I’m fat because obesity runs in my family. No-one runs in your family,” “I’m lazy because I’m fat and I’m fat because I’m lazy,” and “Sometimes when I’m sad I like to cut myself … another slice of cheesecake.” When I looked for “fat GIFs” on the GIFY platform, here again were many negative portrayals of fat people, including cartoon characters like Homer Simpson as well as real people, again engaging in humiliating bodily performances. Many of these GIFs showed people jiggling their abdomens or dancing to demonstrate the magnitude of their flesh, belly flopping into swimming pools, eating greedily, smeared with food and so on. Here again, fat white men predominated as targets of ridicule.

Apps are another dominant media form that often focuses on the monitoring, representation and even gamification of human embodiment. As I have argued elsewhere, the ways in which game apps portray social groups can often reproduce and exacerbate negative or misleading stereotypes, including racism, sexism, healthism and norms of feminine embodiment privileging highly-groomed, youthful, physically fit and slim bodies (Lupton 2015, Lupton and Thomas 2015). When I searched the App Annie platform using the term “fat,” a plethora of apps portraying fat bodies in negative ways were identified. These included several game apps that represented fat people as ugly, greedy, lazy and gormless figures of fun who need encouragement to engage in weight-loss activities. Many other apps involve users (who are assumed not to be fat) manipulating images of themselves or others so that they look fat. These include “FatGoo”, marketed by its developers in the following terms: “Gaining weight is now fun! FatGoo is the ultimate app for creating hilarious fat photos of your friends and family.” Others of this ilk include “Fatty – Make Funny Fat Face Pictures,” “Fat You!,” “FatBooth” and “Fatify – Get Fat.” Another fat app genre is that which uses abusive terms to shame people into controlling their diet and lose weight. One example is “CARROT Hunger – Talking Calorie Counter.” It is marketed by its developer as a “judgemental calorie counter” which will “punish you for overindulging.” The app can be used to scan foods for their calorie content. If it judges food as too high in calories, users are abused with insulting epithets such as “flabby meatbags” and even tweets shaming messages about them to their Twitter followers. While such apps may be considered by some as harmless fun, they play a serious ideological role in stigmatizing and rendering abject fatness and fat people.

… Thinspiration is a profoundly gendered discourse. Far more female than male bodies feature in digital images tagged with #thinspiration or #thinspo. I noted earlier that white men tend to be targeted for ridicule in memes and GIFs. Interestingly, my search for “skinny” or “thin” memes and GIFs also hold up white male bodies to derision, this time drawing attention to thin men as lacking appropriate muscular strength. Many memes show half-naked thin men in body-building poses, seeking to highlight their lack of size. When skinny women are featured in memes and GIFS, it is usually in relation to women who falsely claim or complain about being fat or else are sexualized images of young women in swimwear displaying their lean bodies (often tagged in GIFs with #hot #beauty, #perfect and #sexy as well as #thin, #thispo or #skinny). Thin women, these memes suggest, are to be envied because they conform to conventions of female attractiveness. In contrast, thin men are deficient because they fail to achieve ideals of masculine strength and size. The fitspiration or fitspo terms are more recent, but they also take up and reproduce many of the ideals of thinspiration, and similarly have a strong focus on physical appearance and conventional sexual attractiveness. The bodies that are championed in fitspiration are physically toned, active, strong and fit as well as slim (but not emaciated), and are similarly eroticized, with both female and male bodies featuring (Boepple et al. 2016, Boepple and Thompson 2016, Tiggemann and Zaccardo 2016).

References

Boepple, L., Ata, R.N., Rum, R. and Thompson, J.K. (2016) Strong is the new skinny: a content analysis of fitspiration websites. Body Image, 17 132-135.

Boepple, L. and Thompson, J.K. (2016) A content analytic comparison of fitspiration and thinspiration websites. International Journal of Eating Disorders, 49 (1), 98-101.

Hussin, M., Frazier, S. and Thompson, J.K. (2011) Fat stigmatization on YouTube: a content analysis. Body Image, 8 (1), 90-92.

Lupton, D. (2015) Digital Sociology. London: Routledge.

Lupton, D. and Thomas, G.M. (2015) Playing pregnancy: the ludification and gamification of expectant motherhood in smartphone apps. M/C Journal (5). Accessed 22 October 2015. Available from http://journal.media-culture.org.au/index.php/mcjournal/article/viewArticle/1012.

Tiggemann, M. and Zaccardo, M. (2016) ‘Strong is the new skinny’: a content analysis of #fitspiration images on Instagram. Journal of Health Psychology, online ahead of print.

Yoo, J.H. and Kim, J. (2012) Obesity in the new media: a content analysis of obesity videos on YouTube. Health Communication, 27 (1), 86-97.

 

 

Cycling self-tracking and data sense

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This week I am delivering a paper at the joint 4S (Society for the Social Studies of Science) and EASST (European Association for the Study of Science and Technology) conference in Barcelona. The paper is in the track ‘Everyday analytics: the politics and practices of self-monitoring’. In the paper I discuss elements of my Living Digital Data research program and describe one of my research projects, which investigates the self-tracking practices of commuting cyclists who use digital devices to monitor their rides.

The research team (myself and Christine Heyes Labond from the University of Canberra and Sarah Pink and Shanti Sumartojo from RMIT Melbourne) conducted empirical research with 18 participants living in Canberra and Melbourne about their self-tracking practices. We used a combination of interviews, enactments of people getting ready for and completing their cycling trips and footage of the cycling trips themselves taken from the perspective of the cyclists (using a GoPro mini action camera mounted on their helmet).

Here are the slides from the paper, which outlines details of the project and some of the findings. Data sense 4S Barcelona

Lively devices, lively data and lively leisure studies

This is a foreword I wrote for a Leisure Studies special issue on digital leisure cultures (the link to the journal version is here).

In the countries of the Global North, each person, to a greater or lesser degree, has become configured as a data subject. When we use search engines, smartphones and other digital devices, apps and social media platforms, and when we move around in spaces carrying devices the record our geolocation or where there are embedded sensors or cameras recording our movements, we are datafied: rendered into assemblages of digital data. These personal digital data assemblages are only ever partial portraits of us and are constantly changing: but they are beginning to have significant impacts on the ways in which people understand themselves and others and on their life opportunities and chances. Leisure cultures and practices are imbricated within digital and data practices and assemblages. Indeed, digital technologies are beginning to transform many areas of life into leisure pursuits in unprecedented ways, expanding the purview of leisure studies.

These processes of datafication can begin even before birth and continue after death. Proud expectant parents commonly announce pregnancies on social media, uploading ultrasound images of their foetuses and sometimes even creating accounts in the name of the unborn so that they can ostensibly communicate from within the womb. Images from the birth of the child may also become publicly disseminated: as in the genre of the childbirth video on YouTube. This is followed by the opportunity for parents to record and broadcast many images of their babies’ and children’s lives. At the other end of life, many images of the dying and dead bodies can now be found on the internet. People with terminal illnesses write blogs, use Facebook status updates or tweet about their experiences and post images of themselves as their bodies deteriorate. Memorial websites or dedicated pages on social media sites are used after people’s death to commemorate them. Beyond these types of datafication, the data generated from other interactions online and by digital sensors in devices and physical environments constantly work to generate streams of digital data about people. In some cases, people may choose to generate these data; in most other cases, they are collected and used by others, often without people’s knowledge or consent. These data have become highly valuable as elements of the global knowledge economy, whether aggregated and used as big data sets or used to reveal insights into individuals’ habits, behaviours and preferences.

One of my current research interests is exploring the ways in which digital technologies work to generate personal information about people and how individuals themselves and a range of other actors and agencies use these data. I have developed the concept of ‘lively data’, which is an attempt to incorporate the various elements of how we are living with and by our data. Lively data are generated by lively devices: those smartphones, tablet computers, wearable devices and embedded sensors that we live with and alongside, our companions throughout our waking days. Lively data about humans are vital in four main respects: 1) they are about human life itself; 2) they have their own social lives as they circulate and combine and recombine in the digital data economy; 3) they are beginning to affect people’s lives, limiting or promoting life chances and opportunities (for example, whether people are offered employment or credit); and 4) they contribute to livelihoods (as part of their economic and managerial value).

These elements of datafication and lively data have major implications for leisure cultures. Research into people’s use of digital technologies for recreation, including the articles collected here and others previously published in this journal, draws attention to the pleasures, excitements and playful dimensions of digital encounters. These are important aspects to consider, particularly when much research into digital society focuses on the limitations or dangers of digital technology use such as the possibilities of various types of ‘addiction’ to their use or the potential for oppressive surveillance or exploitation of users that these technologies present. What is often lost in such discussions is an acknowledgement of the value that digital technologies can offer ordinary users (and not just the internet empires that profit from them). Perspectives that can balance awareness of both the benefits and possible drawbacks of digital technologies provide a richer analysis of their affordances and social impact. When people are using digital technologies for leisure purposes, they are largely doing so voluntarily: because they have identified a personal use for the technologies that will provide enjoyment, relaxation or some other form of escape from the workaday world. What is particularly intriguing, at least from my perspective in my interest in lively data, is how the data streams from digitised leisure pursuits are becoming increasingly entangled with other areas of life and concepts of selfhood. Gamification and ludification strategies, in which elements of play are introduced into domains such as the workplace, healthcare, intimate relationships and educational institutions, are central to this expansion.

Thus, for example, we now see concepts of the ‘healthy, productive worker’, in which employers seek to encourage their workers to engage in fitness pursuits to develop highly-achieving and healthy employees who can avoid taking time out because of illness and operate at maximum efficiency in the workplace. Fitness tracker companies offer employers discounted wearable devices for their employees so that corporate ‘wellness’ programs can be put in place in which fitness data sharing and competition are encouraged among employees. Dating apps like Tinder encourage users to think of the search for partners as a game and the attractive presentation of the self as a key element in ‘winning’ the interest of many potential dates. The #fitspo and #fitspiration hashtags used in Instagram and other social media platforms draw attention to female and male bodies that are slim, physically fit and well-groomed, performing dominant notions of sexual attractiveness. Pregnancy has become ludified with a range of digital technologies. Using their smartphones and dedicated apps, pregnant women can take ‘belfies’, or belly selfies, and generate time-lapse videos for their own and others’ entertainment (including uploading the videos on social media sites). 3D-printing companies offer parents the opportunity to generate replicas of their foetuses from 3D ultrasounds, for use as display objects on mantelpieces or work desks. Little girls are offered apps which encourage then to perform makeovers on pregnant women or help them deliver their babies via caesarean section. In the education sector, digitised gamification blurs leisure, learning and physical fitness. Schools are beginning to distribute heart rate monitors, coaching apps and other self-tracking devices to children during sporting activities and physical education classes, promoting a culture of self-surveillance via digital data at the same time as teachers’ monitoring of their students’ bodies is intensified. Online education platforms for children like Mathletics encourage users to complete tasks to win medals and work their way up the leaderboard, competing against other users around the world.

In these domains and many others, the intersections of work, play, health, fitness, education, parenthood, intimacy, productivity, achievement and concepts of embodiment, selfhood and social relations are blurred, complicated and far-reaching. These practices raise many questions for researchers interested in digitised leisure cultures across the age span. What are the affordances of the devices, software and platforms that people use for leisure? How do these technologies promote and limit leisure activities? How are people’s data used by other actors and agencies and in what ways do these third parties profit from them? What do people know about how their personal details are generated, stored and used by other actors and agencies? How do they engage with their own data or those about others in their lives? What benefits, pleasures and opportunities do such activities offer, and what are their drawbacks, risks and harms? How are the carers and teachers of children and young people encouraging or enjoining them to use these technologies and to what extent are they are aware of the possible harms as well as benefits? How are data privacy and security issues recognised and managed, on the part both of those who take up these pursuits voluntarily and those who encourage or impose them on others? When does digitised leisure begin to feel more like work and vice versa: and what are the implications of this?

These questions return to the issue of lively data, and how these data are generated and managed, the impact they have on people’s lives and concepts of selfhood and embodiment. As I noted earlier, digital technologies contribute to new ways of reconceptualising areas of life as games or as leisure pursuits that previously were not thought of or treated in those terms. In the context of this move towards rendering practices and phenomena as recreational and the rapidly-changing sociomaterial environment, all social researchers interested in digital society need to be lively in response to lively devices and lively data. As the editors of this special issue contend, researching digital leisure cultures demands a multidisciplinary and interdisciplinary perspective. Several exciting new interdisciplinary areas have emerged in response to the increasingly digitised world: among them internet studies, platform studies, software studies, critical algorithm studies and critical data studies. The ways in which leisure studies can engage with these, as well the work carried out in sub-disciplines such as digital sociology, digital humanities and digital anthropology, have yet to be fully realised. In return, the key focus areas of leisure studies, both conceptually and empirically – aspects of pleasure, performance, politics and power relations, embodiment, selfhood, social relations and the intersections between leisure and work – offer much to these other areas of enquiry.

The articles published in this special issue go some way to addressing these issues, particularly in relation to young people. The contributors demonstrate how people may accept and take up the dominant assumptions and concepts about idealised selves and bodies expressed in digital technologies but also how users may resist these assumptions or seek to re-invent them. As such, this special issue represents a major step forward in promoting a focus on the digital in leisure studies, working towards generating a lively leisure studies that can make sense of the constantly changing worlds of lively devices and lively data.

Digital risk society

An excerpt from a chapter I wrote for The Routledge Handbook of Risk Studies (2016). This is the introduction to the chapter. The pre-print of the full chapter is available open access here.

As social life and social institutions have become experienced and managed via novel forms of digital technologies, and as both public and personal spaces as well as human bodies have become increasingly monitored by digital surveillance devices and sensors, a new field of risk inquiry has opened up in response to what might be termed ‘digital risk society’.  The intersections between risk and digital technologies operate in several ways. First, the phenomena and individuals that are identified as ‘risks’ or ‘risky’ are increasingly configured and reproduced via digital media, devices and software. These technologies act not only as mediators of risk but frequently are new sources of risk themselves. Second, various uses of digital technologies are often presented as posing risks to users. In a third major dimension, members of some social groups are positioned in the literature on the ‘digital divide’ as at particular risk of disadvantage in relation to communication, education, information or better employment opportunities because they lack access to or interest or skills in using online technologies.

These three dimensions of digital risk society require new sources of theorising risk that are able to understand and elucidate the ways in which digitisation and risk intersect to create risk representations, mentalities and practices. This chapter addresses each one of these major dimensions in turn. Before doing so, however, it is important to introduce some of the perspectives that may be productively employed to theorise digital risk society. This involves moving away from approaches that traditionally have dominated risk sociology and embracing the ideas of writers in such fields as digital sociology, internet studies, new media and communication and surveillance studies.

Death and dying online

I am currently completing my new book, entitled Digital Health: Critical Perspectives (to be published by Routledge early next year). One of the chapters focuses on the ways in which human bodies are portrayed in digital media. I wanted to write some paragraphs about digital representations of dying and dead bodies, but not much previous research that I can find has addressed this issue. There is a growing body of literature on how the dead are memorialised on social media, but very little about actual images of the dying and dead online. This is interesting in itself, given that death is such a taboo and often avoided subject.

Here is some material I have found and included in the chapter.

It is now possible for audiences to find images of death and dying at all phases of human life. The Visible Human Project developed by the US National Library of Medicine is one example of how dead human flesh has been rendered into a digital format and placed on the internet for all to view. The Visual Human Project used computer technologies to represent in fine detail the anatomical structure of male and female cadavers. Each body was cross-sectioned transversely from head to toe and images of the sections of their bodies using magnetic resonance imaging, computed tomography and anatomical images were uploaded to a computer website and can also be viewed at the National Museum of Health and Medicine in Washington DC.

Social media platforms host images of dead bodies and first-person accounts of dying. One example that created controversy in the news media was the Instagram account of an American pathologist. She posted hundreds of images of autopsied corpses on her account, claiming it to be a form of public education. Another website, Unidentified Dead Bodies, has been established in India as a public service to assist with the identification of corpses. It features images of the bodies and details about where they were found, asking viewers to contact police or the coroner in charge of the case with any information they may have about the dead people portrayed on the site. A Chicago medical examiner’s office has undertaken a similar exercise, posting photographs of unidentified bodies that have come in for examination on its website. Several other examples of this type of publication of images of corpses can be found online. Indeed, simply typing in ‘unidentified dead bodies’ into a search engine gives ready access to many of these images.

Some people who have confronted a fatal illness have blogged about their experiences, presenting a written portrayal of their last days, sometimes accompanied by images of their failing bodies. There are numerous videos posted on YouTube showing the end of  life stages of mortally ill people, death and after-death scenes posted by friends or family members of the dead. Many memorial blogs and YouTube videos feature parents mourning pregnancy loss and stillborn infants, often featuring images of the dead foetuses or infants (I discuss this in my book The Social Worlds of the Unborn).

These are the kind of accounts and images of the dying and dead human body that until the advent of the internet would have received little or no exposure. While bereaved people in the Victorian era often had photographs taken of dead relatives, especially babies and children (sometimes with the living relatives posing alongside them), these images were kept to the private domain. Some may find these images distasteful, ghoulish or confronting. Yet advocates see their publication as a positive move towards better knowledge of death and dying.

 

Twitter and health

Surprisingly little research by sociologists or media studies researchers has investigated how Twitter is used to discuss health and medical issues. Yet there are many interesting issues and topics to explore.

The Healthcare Hashtag Project operated by Symplur, a healthcare social media analytics company, provides a publicly available online resource that demonstrates the diversity of health and medical topics that are discussed on Twitter. When I checked the website in early May 2016, the Project had identified close to 13,000 healthcare topics, over 10,000 hashtags related to healthcare and almost 4,000 contributors to these discussions on Twitter. The diseases that were receiving attention on Twitter on that day included breast cancer, migraine, brain tumours, lymphoma, heart disease, diabetes, lung cancer, attention deficit disorder and leukaemia (these were the top ten trending diseases in order).

The site also shows the ‘influencers’ in the Twitter discussions it documents as well as the latest tweets related to the hashtags it collects. This information demonstrates the sheer diversity of actors who engage in discussions about medical conditions and healthcare on Twitter. The top ten (by mentions) ‘influencers’ for the hashtag #BCSM (denoting ‘breast cancer social media’) were a clinical professor in surgery, four individual breast cancer survivors, a medical school and a research institute, two patient coalitions (one for men with breast cancer and one for young women with breast cancer) and the Journal of the American Medical Association.

The story is quite different if the hashtag #digitalhealth is examined. Another market research company has analysed over 200,000 tweets and almost 30,000 engaged users to identify the top influencers and brands in Twitter discussions using #digitalhealth. The company looked at tweets using this hashtag over a period of four months spanning January to April 2016 and produced a list of the top 100 influencers (based on PageRank analytics that takes into account the number and quality of textual references).

The first four influencers listed (who gained much higher influence scores than any of the 96 others on the list), included Hungarian doctor, genomic scientist, digital health consultant and self-described ‘medical futurist’ Bertalan Mesko, followed by American John Nosta, another digital health consultant who runs his own think tank and is a member of the Google Health Advisory Board. A British health technologist, Alex Butler is next and fourth is American Paul Sonnier, another digital health consultant. These influencers are followed by more representatives of private digital health consulting or technology companies, some tech journalists and a representative from massive American pharmaceutical chain Walgreens. Academics are not well represented in the top 20: only three appear, beginning from number 13 on the list. Practising doctors and individual patients, or organisations for doctors or patients, are scarce.

The most common topics discussed by the top influencers were data (by a long way, accounting for a quarter of the tweets), the Internet of Things and wearable tech. The topics of apps, cancer, artificial intelligence, cybersecurity and telemedicine were the next-most discussed (however, they all received less than 10 per cent of discussion across the tweets).

It is evident from this report that digital health discussions on Twitter (at least those that use #digitalhealth to signify their content) are dominated by commercial and entrepreneurial interests rather than by the experiences of doctors or patients. With the exception of Susannah Fox from the US Department of Health and Human Services, spokespeople from government agencies appear to have little influence in these discussions. This is borne out by the list of top-most influential brands, which are again dominated by commercial enterprises (although the NHS England is included towards the bottom of the top 25).

These data raise some interesting questions for a digital health sociologist. How do voices other than commercial enterprises get heard on Twitter? What makes some conditions or diseases more talked about on Twitter than others? For example, why is breast cancer so prominent — is it because there are far more patient advocates and organisations for patients devoting attention to discussing this , or is it because it is a common form of cancer, or are other factors involved? Why do some practising doctors and medical specialists decide to get involved in Twitter discussions on a particular condition or a digital health technology? How do all the different actors engage with each other –- who pays attention to whom? What kinds of networks are formed between actors from the different groups who are advocates or healthcare providers or developers?