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.

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. (Edited to add – the published version of the article in the journal is here).

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.

Call for abstracts – Digital Food Cultures symposium

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I am convening a one-day symposium on Digital Food Cultures, to be held at the University of Canberra on Friday 20 October 2017. If you are interested in presenting at this symposium, the call for abstracts is now out.

This symposium is directed at the social, cultural, political and ethical dimensions of representations and practices related to using digital technologies for food production, consumption, preparation, eating out, promoting healthy diets or weight loss, marketing, ethical consumption, food activism and environmental and sustainability politics.

Topics may include, but are not limited to food-related apps, online videos, GIFs and memes, other platforms, digital food-related games, wearable devices, digital food data and 3D printed food technologies.

I plan to edit a special journal issue from selected symposium papers.

Please send abstracts (with your name, university affiliation and title of paper) of 150-200 words to me by 1 June 2017 at deborah.lupton@canberra.edu.au.

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.

 

 

3D printing technologies: social perspectives

I have mused before on this blog about the need for sociocultural and critical perspectives on 3D printing technologies (see here). I recently submitted an entry on 3D printing for the Wiley Blackwell Encyclopedia of Sociology. This entry needed to be very short, and in writing it I worked from a longer working paper that includes more detail and references. This working paper can be found here – the abstract is below.

Three-dimensional (3D) printing is a process of fabricating objects using computer-aided design software and hardware that responds to instructions from the software. In this working paper, I provide an overview of 3D printing technologies, including their current and proposed uses. It has been suggested that these technologies offer a way of contributing to the reduction of environmental pollution by reducing the need for transporting goods and minimising waste and energy use in production and may lead to third industrial revolution, including in developing countries. The technologies have also been heralded as promoting open knowledge sharing and creative coding and as potentially contributing to participatory design opportunities and the democratisation of invention, as well as education and cultural heritage. The paper addresses the social, cultural, political and ethical issues concerning 3D printing and outlines directions for future sociological research on these technologies.

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?’

When data do not make sense

One of my current areas of research interests focuses on how to conceptualise digital data and the ways in which humans make sense of their personal data. Next week I am attending a workshop in Copenhagen run as a part of a series convened by RMIT’s Data Ethnographies Lab. We are addressing the topic of ‘broken data’, or digital data that for some reason do not work, are considered useless or fail to make sense to the people reviewing them.

Drawing on some of my own concepts of digital data, I have produced the following metaphorical alternatives to that of ‘broken data’.

Metaphor 1: if data are liquid, then …

  • there can be blockages in data flows
  • moving data can become stuck
  • contained data can become out of control (like tsunamis or floods)
  • liquid data can become frozen

Metaphor 2: if data are lively, or companion species, then …

  • alive data can die
  • domesticated data can become wild
  • fresh data can decompose
  • healthy data can become sick

Metaphor 3: if data can be eaten/consumed, then …

  • data can become self or considered not-self
  • data can be incorporated or not incorporated
  • data can be digestible or indigestible
  • data can be edible or inedible