Talks in Europe, November 2017

I am visiting Europe to give several talks in early November. Details are as follows:

Wednesday 1 November: Keynote presentation at the ‘Emotion and Affect in Dataified Worlds’ workshop, Helsinki, Finland.

Friday 3 November: Opening presentation with our Wellcome Trust grant research team at the ‘Researching Young People and Digital Health Technologies’ symposium we have organised, Manchester, UK (details here).

Monday 6 November:  Invited public lecture at the ‘Digital Health’ workshop, Malmo, Sweden.

Tuesday 7 November: Invited presentation at the ‘Challenges of Digital Health’ workshop, Orebro, Sweden.

Friday 10 November: Keynote at the ‘Monitoring the Self: Negotiating Technologies of Health, Identity and Governance’ conference, Helsinki, Finland (details here).

The senses and digital health

I have edited a special issue for the journal Digital Health on the theme of ‘The senses and digital health: sociocultural perspectives’.  Part of the editorial I have just finished for the special issue is excerpted below. The whole preprint of my editorial is here: Preprint of editorial for special issue on senses and digital health

A few days before I began writing this editorial, I ran a discussion group with some people who were attending an outpatient cardiovascular rehabilitation program at a hospital in my home city, Canberra. The purpose of the discussion was to discover what sources of information and support people who had recently received hospital treatment for a serious heart condition were using and found valuable. As one of my major areas of research is the social and cultural dimensions of digital health (see, for example, my book Digital Health), I was particularly interested in the digital media and devices they may be using.

I began with general questions about what sources of information the participants had found useful in learning about their heart condition and rehabilitation following their diagnosis and surgery at this hospital. The group members told me that the hospital cardiac rehabilitation sessions were very important to them, not only as a way to learn about recovery and preventive actions they could take to improve their coronary health, but also as an opportunity to interact with other people who had gone through similar experiences. They explained that, together with the sessions they attended as part of this program, the print material (pamphlets and a book) about cardiac rehabilitation that had been given to them by the hospital had been the major contributors to learning about their disease and recovery. They commented that they had been able to discuss aspects of these materials during face-to-face encounters with healthcare staff if they needed to ask questions or receive clarification on any of the information within. Some people had also attended pre-admission group information sessions after their cardiac condition had been diagnosed, which their partner was also encouraged to attend. Others had had no opportunity for this kind of preparation, as they had experienced a sudden heart attack and found themselves in the emergency department receiving medical attention with little warning.

A dominant theme that emerged from the participants’ accounts was their desire to share insights from their experiences about the mysterious and unexpected nature of heart disease or heart failure. Several participants recounted their stories of how they had been diagnosed with heart disease or suffered a heart attack without realising that there was any problem with their hearts. For these people, the best way to share the insights they had gained from their own experiences was to tell their friends and family about it, as a form of warning. For some, friends or family members who had already experienced a heart condition were a source of information. They had listened to these other people recount their experiences and learnt about the symptoms and treatment.

When I moved onto the topic of digital technologies, it was clear that these were not important to most people in this rehabilitation program. Only about half of them even owned a smartphone. Several people said that they used at-home blood pressure and pulse rate monitoring devices as a way of tracking their heart health. They had purchased these from pharmacies, on their own initiative, rather than being encouraged to do so by their doctors. They printed out the data from a spreadsheet they maintained, or recorded their details with pen-and-paper, and showed this information to their doctors on follow-up appointments.

None of the participants used a digital device like a smartphone app or wearable device for monitoring their blood pressure. A small number did use these devices for tracking other body metrics, such physical activity levels. They were all in the younger age group (aged below 60). In terms of online sources of information, very few of the group had searched prior to their diagnosis for information related to any symptoms they may have experienced. About a third of the participants did go online after their diagnosis or surgery to seek information. However, none of the participants had ever used a patient support online forum or social media community for their health condition. When asked what they will do once they have finished the six weeks of the cardiac rehabilitation program, some mentioned that they would join one of their local gyms to continue their exercise routines. None was interested in joining an online patient support group at that point.

Reflecting on this focus group discussion as I write this editorial has highlighted some of the key issues I envisaged the issue as exploring. While my initial focus was digital health, these responses proved enlightening to me in their very de-emphasis and backgrounding of the digital. They provide a compelling counter to the techno-utopian visions that are often put forward by advocates of digital health technologies and the ideal of the ’digitally engaged patient’ that has become so dominant in the technological, medical and public health literature.

Profound affective and sensory aspects of living as a cardiac disease survivor were expressed in the participants’ accounts. For them, a key issue in how information about cardiovascular disease is communicated and shared was finding some way to let others know about the diverse symptoms that are not always recognised as signalling a heart problem. They reflected that they themselves in many cases hadn’t recognised the symptoms when they were living through the experience. The discussion group provided a forum for people to tell stories of hidden illness striking suddenly and catastrophically. They emphasised the uncertainty of not knowing what the physical sensations they were experiencing were, and whether they should be concerned and seek immediate medical attention.

Listening to their heart disease stories, and reading over them later as transcripts, I was reminded of Arthur Frank’s influential book The Wounded Storyteller, in which he discusses how people’s illness and physical suffering are expressed as narratives. Frank describes the wounded storyteller as ‘anyone who has suffered and lived to tell the tale … a guide and companion, a truth teller and trickster. She or he is a fragile human body and a witness to what endures’.

In the face of this uncertainty and experiencing life-threatening illness, major surgery, and then long recovery, the medical care and continuing support provided to the patients were vital to their sense of security and confidence in the integrity of their bodies. The participants’ positive feelings towards the rehabilitation program and what it offered them were obvious in their accounts. While the space and people were unfamiliar to me, I could perceive that the group members felt at ease coming to this space to which they were now habituated through their twice-weekly visits, and with staff who knew them and spoke to them kindly, and the other cardiac disease survivors in the group they had come to know. Compared with the strength of feeling about the face-to-face encounters they had in this program, the support and information offered by digital technologies were very much in the background. They were simply not important in these people’s everyday experiences of recovering from and managing their cardiac conditions.

These people’s experiences as they recounted them with filled with sensation and affect: the intense and sudden pain they experienced when having a heart attack, the surprise they felt at being diagnosed with a heart condition, the relief of having survived a serious medical problem and, in many cases, major surgery, and the comfort and reassurance of being supported during their rehabilitation by hospital staff and other group members. These were people whose everyday routines and assumptions about their bodies had been thrown into disarray. They wanted to be able to convey these sensory and affective experiences to me, and to others to warn them and instruct them on how to interpret their bodily signs and symptoms.

For this group, comprised of people who in many cases were not highly digitally literate or regular users of digital devices, digital technologies were on the margins of their care and support, or simply non-existent in their lifeworlds. It was the health professionals at the hospital, the other group members, the space provided for them to which they had become accustomed, and the print material given to them at the hospital that were the important and trusted elements in lifeworlds which they were moving and recovering their bodily integrity and confidence. The findings from the discussion group raise further questions about what further support should be offered to people once the six weeks of the rehabilitation program are over, and whether this should be mediated via digital technologies or provided in other ways.

New book out – Digital Health: Critical and Cross-Disciplinary Perspectives

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My new book Digital Health: Critical and Cross-Disciplinary Perspectives has now been published with Routledge (link to the book is here). I have included excerpts from the book on this blog as I was writing it: see here, here,  here and here.

I did a Q&A session for Routledge, in which I explained some of the background to the book and give some advice for aspiring writers in my field. There is also a link to view the introductory chapter (see here).

 

Social media and self-representation in health and medical domains

Funny-Meme-about-Depression-4-300x300This is an excerpt from chapter 3 (on digitised embodiment) in my forthcoming book Digital Health: Critical and Cross-Disciplinary Perspectives, due to be published this August – details here.

It is not only medical technologies that have contributed to new forms of digitised embodiment. Many popular forums facilitate the uploading of images and other forms of bodily representations to the internet for others to view. Pregnancy, childbirth and infant development represent major topics for self-representation and image sharing on social media. Since the early years of the internet, online forums and discussion boards have provided places for parents (and particularly women) to seek information and advice about pregnancy, childbirth and parenting as well as share their own experiences. Apps can be now be used to track pregnancy stages, symptoms and appointments and document time-lapse selfies featuring the expansion of pregnant women’s ‘baby bumps’. Foetal ultrasound images are routinely posted on Facebook, Twitter, Instagram and YouTube by excited expectant parents (Thomas and Lupton, 2015; Lupton and Thomas, 2015; Lupton, 2016).

Some parents continue the documentation of their new baby’s lives by sharing photographs and videos of the moment of their birth (Longhurst, 2009) and milestones (first steps, words uttered and so on) on social media. Wearable devices and monitoring apps allow parents to document their infants’ biometrics, such as their sleeping, feeding, breathing, body temperature and growth patterns (Lupton and Williamson, 2017). The genre of ‘mommy blogs’ also offers opportunities for women to upload images of themselves while pregnant and their babies and young children, as well as providing detailed descriptions of their experiences of pregnancy and motherhood (Morrison, 2011). These media provide a diverse array of forums for portraying and describing details infants’ and young children’s embodiment. A survey of 2,000 British parents’ use of social media for sharing their young children’s images conducted by an internet safety organisation estimated that the average parent would have posted almost 1,000 images to Facebook (and to a much lesser extent, Instagram) by the time their child reached five (Knowthenet 2015). Contemporary children, therefore, now often have an established digital profile before they are even born offering an archive of their physical development and growth across their lifespans.

People with medical conditions are now able to upload descriptions and images of their bodies to social media to share with the world. YouTube offers a platform for such images, but they are also shared on other social media such as Facebook, Instagram, Tumblr and Pinterest. Pinterest offers a multitude of humorous memes and images with inspirational slogans designed to provide support to people with various conditions such as chronic illness. Humorous memes include one with a drawing of a young woman sitting on a bed with her hand over her face and the words ‘Why are there never any good side effects? Just once I’d like to read a medication bottle that says, “May cause extreme sexiness”’. Other images about chronic illness are less positive, used to express people’s despair, pain or frustration in struggling with conditions such as autoimmune diseases, endometriosis and diabetes. Examples include a meme featuring a photo of a person with head bowed down (face obscured) and the words ‘When your chronic illness triggers depression’ and another showing a young woman’s face transposed over an outline of her body with the text: ‘The worst thing you can do to a person with an invisible illness is make them feel like they need to prove how sick they are.’

‘Selfie’ portraits enable people to photograph themselves in various forms of embodiment. There is now a genre of selfies showing subjects experiencing ill-health or medical treatment. These include self-portraits taken by celebrities in hospital receiving treatment for injuries. A larger category of health and medical-related selfies include those that show people in a clinical or hospital setting undergoing treatment, experiencing symptoms or their recovery after surgery. Among the social media platforms available for such representation, Tumblr is favoured as a forum for posting more provocative images that challenge accepted norms of embodiment. One example is Karolyn Gehrig, who uses the #HospitalGlam hashtag when posting selfies featuring her self-identified ‘queer/disabled’ body in hospital settings. Gehrig has a chronic illness requiring regular hospital visits, and uses the selfie genre to draw attention to what it is like to live with this kind of condition. The photographs she posts of herself include portraits in hospital waiting and treatment rooms in glamour-style poses. She engages in this practice as a form of seeking agency and control in settings that many people find alienating, shaming and uncertain (Tembeck, 2016).

People who upload selfies or other images of themselves or status updates about their behaviour on social media are engaging in technologies of the self. They seek to present a certain version of self-identity to the other users of the sites as part of strategies of ethical self-formation (van Dijck, 2013; Sauter, 2014; Tembeck, 2016). In the context of the ‘like economy’ of social media (which refers to the positive responses that users receive from other users on platforms like Facebook, Twitter and Instagram) (Gerlitz and Helmond, 2013), users of these platforms are often highly aware of how they represent themselves. This may involve sharing information about a medical condition or self-tracking fitness or weight-loss data (Stragier et al., 2015) as a way of demonstrating that the person is adhering to the ideal subject position of responsibilised self-care and health promotion.

It can be difficult for users to juggle competing imperatives when sharing information about themselves online. Young women, in particular, are faced with negotiating self-representation practices on social media that conform to accepted practices of fun-loving femininity, attractive sexuality or disciplined self-control over their diet and body weight but do not stray into practices that may open them to disparagement for being ‘slutty’, fat, too drunk or otherwise lacking self-control, too vain or self-obsessed or physically unattractive (Hutton et al., 2016; Ferreday, 2003; Brown and Gregg, 2012).  It is important to acknowledge that as part of self-representation, people may also seek to use their social media forums to resist health promotion messages: by showing people enjoying using illicit drugs or alcoholic drinking to excess, for example. Fat activists have also benefited from the networking opportunities offered by blogs and social media to work against fat shaming and promote positive representations of fat bodies (Cooper, 2011; Smith et al., 2013; Dickins et al., 2011).

More controversially, those individuals who engage in proscribed body modification practices, such as self-harm, steroid use for body-building or the extreme restriction of food intake (as in ‘pro-ana’ and ‘thinspiration’ communities) also make use of social media sites to connect with likeminded individuals (Boero and Pascoe, 2012; Center for Innovative Public Health Research, 2014; Fox et al., 2005; Smith et al., 2013). Most social media platforms have polices in place to prohibit these kinds of interactions, but in practice many users manage to evade them. The platforms have a difficult task, because they want to support people’s attempts to communicate with each other about their management of and recovery from health conditions like self-harm or eating disorders but are loath to be viewed as promoting the efforts of those resisting recovery and promoting these behaviours. Their attempts to police the representation of nude human bodies for fear of contributing to pornography are also controversial. Until it changed its policy in 2014, Facebook was the subject of trenchant critique for censoring photographs that women have tried to share on the platform portraying them breastfeeding their infants because of concerns that they were showing their nipples, a body part that Facebook usually prohibits in users’ posts because they are deemed to be obscene. Facebook’s new policy also allowed mastectomy survivors to post images of their post-operative bare torsos, even when nipples were displayed (Chemaly, 2014).

References

Boero N and Pascoe CJ. (2012) Pro-anorexia communities and online interaction: bringing the pro-ana body online. Body & Society 18: 27-57.

Brown R and Gregg M. (2012) The pedagogy of regret: Facebook, binge drinking and young women. Continuum 26: 357-369.

Center for Innovative Public Health Research. (2014) Self-harm websites and teens who visit them. Available at http://innovativepublichealth.org/blog/self-harm-websites-and-teens-who-visit-them/.

Chemaly S. (2014) #FreeTheNipple: Facebook changes breastfeeding mothers photo policy. Huffpost Parents. Available at http://www.huffingtonpost.com/soraya-chemaly/freethenipple-facebook-changes_b_5473467.html.

Cooper C. (2011) Fat lib: how fat activism expands the obesity debate. Debating Obesity. Springer, 164-191.

Dickins M, Thomas SL, King B, et al. (2011) The role of the fatosphere in fat adults’ responses to obesity stigma: a model of empowerment without a focus on weight Loss. Qualitative Health Research 21: 1679-1691.

Ferreday D. (2003) Unspeakable bodies: erasure, embodiment and the pro-ana community. International Journal of Cultural Studies 6: 277-295.

Fox N, Ward K and O’Rourke A. (2005) Pro-anorexia, weight-loss drugs and the internet: an ‘anti-recovery’ explanatory model of anorexia. Sociology of Health & Illness 27: 944-971.

Gerlitz C and Helmond A. (2013) The like economy: social buttons and the data-intensive web. New Media & Society 15: 1348-1365.

Hutton F, Griffin C, Lyons A, et al. (2016) ‘Tragic girls’ and ‘crack whores’: alcohol, femininity and Facebook. Feminism & Psychology 26: 73-93.

Longhurst R. (2009) YouTube: a new space for birth? Feminist Review 93: 46-63.

Lupton D. (2013) The Social Worlds of the Unborn, Houndmills: Palgrave Macmillan.

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 & Littlefield.

Lupton D and Thomas GM. (2015) Playing pregnancy: the ludification and gamification of expectant motherhood in smartphone apps. M/C Journal, 18. Available at http://journal.media-culture.org.au/index.php/mcjournal/article/viewArticle/1012.

Lupton D and Williamson B. (2017) The datafied child: the dataveillance of children and implications for their rights. New Media & Society.

Morrison A. (2011) “Suffused by feeling and affect”: the intimate public of personal mommy blogging. Biography 34: 37-55.

Sauter T. (2014) ‘What’s on your mind?’ Writing on Facebook as a tool for self-formation. New Media & Society 16: 823-839.

Smith N, Wickes R and Underwood M. (2013) Managing a marginalised identity in pro-anorexia and fat acceptance cybercommunities. Journal of Sociology.

Stragier J, Evens T and Mechant P. (2015) Broadcast yourself: an exploratory study of sharing physical activity on social networking sites. Media International Australia 155: 120-129.

Tembeck T. (2016) Selfies of ill health: online autopathographic photography and the dramaturgy of the everyday. Social Media + Society, 2. Available at http://sms.sagepub.com/content/2/1/2056305116641343.abstract.

Thomas GM and Lupton D. (2015) Threats and thrills: pregnancy apps, risk and consumption. Health, Risk & Society 17: 495-509.

van Dijck J. (2013) ‘You have one identity’: performing the self on Facebook and LinkedIn. Media, Culture & Society 35: 199-215.

 

 

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.

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?’

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.

Digitised dissection: medical procedures on the internet

 

This is an excerpt from my book in progress, Digital Health: Critical Perspectives, to be published by Routledge in 2017.

With the advent of websites, social media platforms and apps, the internal organs and workings of the body have moved from being exclusively the preserve of medical students and surgeons. Digital medical devices have entered into the public arena of the internet, offering new possibilities for lay people to gaze inside the spectacle of the human body. A vast volume of computerised medical images of human life from conception to death are now readily available online. Tapping in such keywords as ‘human anatomy’ will call up many apps on the Apple App Store or Google Play which provide such details. While these apps have been explicitly designed for the use of medical and other healthcare students and trainees, they are readily available to any person who may wish to download them. The Visible Human Project developed by the US National Library of Medicine is an earlier example of how human flesh can be rendered into a digital format and placed on the internet for all to view. The developers of The Visible Human Project used digital technologies to represent in fine detail the anatomical structure of two cadavers (one male and one female). Each body was cross-sectioned transversely from head to toe. Images of the sections of the bodies using MRI and CT scans and anatomical images were uploaded to the Project website. They can also be viewed at the National Museum of Health and Medicine in Washington DC. A similar website, The Visible Embryo, displays images of embryos and foetuses from fertilisation to birth, with a week-by-week display showing the stages of foetal development. The data used for this website were drawn from digitising microscopic cross-sections of human embryo specimens held on slides in The National Institutes of Health’s Carnegie Collection of Embryos as well as from 3D and 4D digital foetal ultrasound images.

Many opportunities are provided on the internet for people who want to view detailed images of surgical and other medical procedures in their full gory detail. YouTube has become a major provider of anatomical and surgical technique videos for medical training. Some medical specialists and surgeons upload images and videos of their work to Snapchat and Instagram, mostly in the effort to promote their services (cosmetic surgeons are in the forefront in this practice). Instagram does not allow users to upload images that are considered too explicit (such as those portraying surgery on breasts or genitals), so some doctors have turned to Shapchat as an alternative forum. One infamous such specialist is Sandra Lee, a dermatologist known as ‘Dr Pimple Popper’. Her Instagram photos and YouTube videos showing her at work have received many millions of views. Perhaps the best-known Snapchatting medical specialist is the cosmetic surgeon ‘Dr Miami’ (Michael Salzhauer), who uploads detailed photos and videos of his surgical procedures (including controversial procedures like labiaplasties, or surgery designed to reshape women’s external genitals). ‘Dr Miami’ is unafraid to Snapchat images of himself brandishing a wad of body fat he has just excised in a tummy tuck. He employs two full-time staff members to manage his social media accounts.

The use of web-streaming services is employed by a number of hospitals to host webcasts of surgical procedures for any interested person to view. The US National Library of Medicine provides a list on its website of several such webcasts with hyperlinks, from numerous different American hospitals. Lay people may now even view live-streamed surgical procedures using a smartphone app and wearing a virtual reality headset to provide a 3D immersive effect, as offered by the Medical Realities company in April 2016. This technology is designed principally for training medical students, but also allows lay people who participate to feel as if they present in the operating theatre.

Pinterest, an image-curating and sharing platform, features many collections of images related to medical matters. Several of these relate to patient experiences of health, but others are curated by medical and nursing students and practising healthcare providers. Some are humorous, featuring memes, cartoons or other images designed to appeal to medical and nursing students and other trainees in the health professions. Other Pinterest photographs feature novelty commodities, again clearly directed to the same audience (for example, anatomical heart or ECG heart beat cookie cutters, human-organ and stethoscope-shaped jewellery, coffee mugs in the shape of spinal vertebrae). While these images are vastly outnumbered by the serious photographs in Pinterest collections that show anatomical images and other medical information (some of which are explicit photographic images that detail flesh, bone and blood), they offer alternative representations of the ways in which human bodies and the practice of healthcare are represented online.

The major differences offered by the latest digital technologies that document and monitor the human body are the continual nature of the surveillance opportunities they present, their expansion from the clinic into domestic and intimate spaces and relationships and their feedback mechanisms, which allow their subjects to ‘read’ and interpret their own bodies via biometric measurements. Medical practices that were once embodied in the flesh, including the development of doctors’ expertise in touching the patient’s body and determining what is wrong, have increasingly become rendered into software such as the video conferencing services offered in remote telemedicine technologies. Virtual bodies have been developed for medical training purposes, allowing students to conduct virtual surgery. To achieve this virtuality, the processes by which doctors practice – their customs, habits and ways of thinking – are themselves digitised. Both doctors and patients are rendered into ‘informatic “body objects”, digital and mathematical constructs that can be redistributed, technologized, and capitalized’ (Prentice, 2013: 20).

Many digital health technologies are directed at illuminating the exterior or interior of the human body with the use of metrics that may represent features of the body as numbers or graphs. The use of apps to collect information about body functions and movements, for example, generates a continuing set of images that represent the body. Biometric data serves first to fragment the body into digitised pieces of information and then to combine these pieces into a recombinant whole that is usually presented in some kind of visual form. Amoore and Hall (2009: 48) use the term ‘digitised dissection’ to refer to the ways in which biometric whole body scanners at airports operate. This term is even more apposite when adopted to discuss the fragmentation of bodies in the context of digital health. Digital technologies are able to peer into the recesses of the body in ever-finer detail, creating new anatomical atlases.

References

Amoore, L. & Hall, A. (2009) Taking people apart: digitised dissection and the body at the border. Environment and Planning D: Society and Space, 27, 444-64.

Prentice, R. (2013) Bodies in Formation: an Ethnography of Anatomy and Surgery EducationDurham, NC: Duke University Press.