Findings from the Young Australians and Digital Health Project

Digital technologies for health-related topics and practices such as websites, online discussion forums, social media, content-sharing platforms, mobile apps and wearable devices are now available as a means for young people to learn about and promote their health, physical fitness and wellbeing. Young people are often assumed to be ardent users of digital health technologies by virtue of having been born into the age of new digital media. Thus far, however, few social research studies have directed attention to the details of how and why young people use digital technologies for health-related purposes and how other, non-digital sources also contribute to the ways in which they learn about their bodies and health and engage in practices to support their health and wellbeing.

The Young Australians and Digital Health Project, a qualitative interview-based study of 30 young Australians (aged 16 to 25 years) was designed to address these issues. The participants were recruited to ensure equal numbers of female and male participants and a spread of ages, ethnic backgrounds and geographical locations across Australia. The interviews took place in April-May 2018. Participants were asked a series of questions relating to how and why they sourced health and medical information and support, and which of these they found most and least useful and helpful. They were asked if anyone had recommended that they use digital health technologies and whether they had any concerns about their personal health data privacy and security. The final question had a future-oriented perspective, asking participants to imagine and describe an ideal digital health technology for their everyday needs.

The interview questions and analysis of transcripts of participants’ responses were designed to draw attention to the affordances of the actors involved (human and nonhuman), relational connections between these actors, affective forces and agential capacities. The affordances of fleshly human bodies include their sensory perceptions, emotional responsiveness, embodied expertise, memory and the ability to learn and to move in certain ways. The affordances of nonhuman objects such as digital technologies relate to the design features of these technologies and what they potentially allow people to do with them. Relational connections include the ways in which humans interact with and respond to other humans, as well as with nonhumans, and how these relationships contribute to or generate bonds and affects.

As the table below shows, all participants said that they sought information from doctors and other healthcare providers, and most also turned to advice from friends and family members. Very few young people used books for health information, but pamphlets were still read by around a third of participants (usually picked up in doctors’ surgeries while waiting for a consultation). In terms of digital tools and resources, search engines were used by everyone, with health websites a close second. All the participants said that they were routinely online throughout the day and were accustomed to searching the internet as a habitual practice for various purposes. They generally searched between once or twice a week or once a month for health-related topics.

Youtube, online discussion groups and social media groups were fairly well-used, but by less than half of the participants. Participants noted that these sources were often found from an initial search using Google Search. Only five of the 30 participants said that they had signed up to My Health Record (Australia’s nationwide patient electronic medical record), with the remainder noting that they had not heard of it.

Sources of health and medical information used currently

SOURCES	Number of respondents (n=30)
Non-digital sources
doctors and other health care providers	30
friends and family	21
pamphlets	11
books	5
Digital sources
search engines	30
health websites	26
YouTube	13
online discussion forums	12
wearable devices	12
social media groups	10
apps	9
digital exercise games (e.g. Wii Fit)	8
electronic medical record (My Health Record)	5
physical activity platforms (e.g. Strava)	6

 

The convenience, accessibility and detail and diversity of information offered by digital media and devices were valued by the participants.

So I would initially just google my query and do a little bit of research on my own but then I would take my problems to a doctor and they would have more detail and more answers for me. I would usually just look up, kind of, symptoms and triggers for certain things. I would mainly just look up information, possibly finding a solution on my own. I like going online for the ease of use, ease of access, variety of information available, all that kind of stuff. (male, 24 years)

The young people also appreciated being able to source others’ personal experiences online by using online discussion forums, social media groups and viewing people’s stories on YouTube. They felt connected to the physically distant others they encountered online through their sharing of experiences and affective responses on these platforms.

Well, probably I just read forums to find information on the forums, the one thing I find useful is that they have allowed people to express their own feelings with different kinds of diseases. And I find that if it relates to me, then I guess it doesn’t make me feel so alone – knowing that what I’m going through, someone else is going through it with it. (male, 24 years)

Apps and wearable devices (mostly Fitbits) were used for mental health and wellbeing and booking medical appointments, as well as for self-tracking sleep, heart rate, steps and other physical activities, and menstrual cycles. Digital exercise games such as Wii Fit and physical activity platforms like Strava were the least used of all the technologies listed. Few participants who did use them did so regularly, with several participants noting that exercise games were too time-consuming to set up.

Doctors were highly valued as the pre-eminent source of health information authority because of their training and expertise. Young people noted that it could be difficult to distinguish between different opinions and details about health and illness expressed online, requiring them to assess which sources were most valid and reliable. By comparison, a doctor’s expertise was individualised to patients’ specific needs and they could offer knowledgeable interpretations based on their training. Young people could then defer to this expertise.

I guess online there’s a lot of different opinions on what something – like, if you think you’ve got a cold or something like that then you go online and I guess you’re not really qualified yourself to go, this is actually what symptoms I’m experiencing and this is what it actually is. Whereas I feel like if you go to a doctor they’re able to pinpoint it quite well. (female, 22 years)

The participants highly valued the capacity of digital technologies to generate detailed information about their bodies and health states and imagined new technologies that would be able to achieve even more detailed personalisation and customisation. However, they expressed little knowledge or concern about how their personal health data may be exploited by other actors or agencies, despite the fact that the interviews took place a matter of weeks after the Facebook/Cambridge Analytics personal data scandal. Several participants said that they had noticed that companies like Facebook and Google were monitoring their online searches and content for advertising purposes, but these practices were accepted as the norm for online engagement.

Obviously, Google, because they’re finding ways to link to merchandise, or that’s what I believe, personally.  If I look up fitness they’ll say, “Oh look at this fitness gear; why don’t you buy it?” I think it’s just society today – I can’t really stop it. (female, 18 years)

The participants’ accounts highlight the importance to this demographic group of the relational and affective dimensions of seeking health-related advice and information. While all the participants went online routinely and regularly to find advice and information, particularly because the internet affords convenience, ready access and a wealth of diverse opinions, it was evident that their connections and relationships with other people, both face-to-face and digitally mediated, were very important. Other key affordances offered by digital technologies included offering material that could be viewed anonymously and unobtrusively.

Feeling understood by and connected to other people was an agential capacity generated through various combinations of humans with each other and with technologies. The ideal digital health technologies that were imagined by the participants also evoked the affordances of convenience and accessibility. These imaginaries also suggested the importance to young people of technologies that could ‘know’ and ‘understand’ them better than those they had already tried.

In summary, these findings highlight that gaining a better knowledge of bodies, illness and healthcare and feeling more in control of health and wellbeing states were important to the young people. They valued face-to-face as well as online relationships and personal connections with other people for providing information and support, including family members and friends as well as medical professionals.

These were the vibrancies that animated the participants’ enactments of seeking and finding health information and support, that kept them googling, reading the content of websites, social media platforms and online forums, watching videos and using apps and wearable devices. While the young people’s consumption of this content may overtly appear to be passive, given that they tended to view rather than create online content, the young people were actively making sense of the material they were accessing and gathering, deciding how relevant or valid it was for their needs, how they would respond to it and whether they needed to seek further advice from doctors or others.

 

 

 

Social media and self-representation in health and medical domains

This 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.

 

 

Self-tracking, social fitness and biovalue

I have just completed a chapter for the forthcoming volume The Sage Handbook of Social Media. The chapter addresses the intersections of self-tracking for health and medical purposes with social media platforms and rationales. As I argue in the chapter, the expanded array of digitised devices that are available for self-tracking and the capacity of many of these technologies to interact with social media platforms have encouraged self-trackers to share the details that they collect about themselves with others. I begin with a description of self-tracking and the sociomaterial theoretical foundations on which the chapter rests. This is followed with an overview of the technologies that are available for health and medical self-tracking and for self-trackers to share their data. The discussion section of the chapter presents an analysis of the new forms of value that personal health and medical data have attracted in the digital data economy, and the moral and political repercussions of encouraging people to participate as socially fit citizens. The chapter ends with outlining key questions for further research.

The full pre-print of the chapter is available here.

Towards a sociology of 3D printing

As a digital sociologist, I have become fascinated by the social and cultural implications of 3D printing technologies. Few sociologists or any other critical academic commentators have begun to investigate how 3D printing is beginning to affect society. Yet as 3D printing technologies move into an expanding realm of contexts, there is much opportunity to analyse their effects. Not only are these technologies having an impact on industrial manufacturing and the distribution of goods, makers, artists and designers are taking them up in intriguing ways. 3D printing is being used in medicine and dentistry, public relations and marketing and in fan cultures. These technologies are being introduced into schools and incorporated into the curriculum. As the price of 3D printers falls, they will become an addition to more households. There are significant environmental and legal issues in relation to how they are used, including questions about intellectual property.

As part of my initial explorations into the sociology of 3D printing, last week I published two pieces on these technologies. One was an article for The Conversation, in which I discussed the phenomenon of the 3D self replica. This is a figurine that can be made of a person using the digital data derived from 3D scanning software. The technologies to generate these artefacts are rapidly moving into a range of leisure domains, including sporting events, shopping centres, airports, concerts and amusement parks as well as fan cultures and marketing programs. 3D printed self replicas can even be made at home using a software package developed for the Xbox Kinect game box and a home 3D printer. Some commentators have referred to these replicas as ‘3D selfies’ because they involve the production of a personal likeness. In the article I speculated about the ways in which people may start to use these figures as markers or mementos of their bodies and social relationships.

The second piece was an academic article that discusses the use of 3D printing of what I entitle ‘digital body objects’ for medical and health-related purposes. The article explores the use of non-organic materialisations of people’s body parts for medical purposes as well as the fabrication of self-tracked bodily data into objects. Here is the abstract: the full paper can be accessed here:

The advent of 3D printing technologies has generated new ways of representing and conceptualising health and illness, medical practice and the body. There are many social, cultural and political implications of 3D printing, but a critical sociology of 3D printing is only beginning to emerge. In this article I seek to contribute to this nascent literature by addressing some of the ways in which 3D printing technologies are being used to convert digital data collected on human bodies and fabricate them into tangible forms that can be touched and held. I focus in particular on the use of 3D printing to manufacture non-organic replicas of individuals’ bodies, body parts or bodily functions and activities. The article is also a reflection on a specific set of digital data practices and the meaning of such data to individuals. In analysing these new forms of human bodies, I draw on sociomaterialist perspectives as well as the recent work of scholars who have sought to reflect on selfhood, embodiment, place and space in digital society and the nature of people’s interactions with digital data. I argue that these objects incite intriguing ways of thinking about the ways in digital data on embodiment, health and illnesses are interpreted and used across a range of contexts. The article ends with some speculations about where these technologies may be headed and outlining future research directions.

These initial forays into a sociology of 3D printing represent merely a small component of possible avenues for theorising and research into the social impact of this technology. What I am particularly interested in at the moment is the implications for people’s data practices, or how the material objects that are generated from 3D printing technologies act as ‘solidified’ personal data. Future writings will investigate these issues in greater depth.

New project on fitness self-tracking apps and websites

My colleague Glen Fuller and I have started a new project on people’s use of fitness self-tracking apps and platforms (such as Strava and RunKeeper). We are interviewing people who are active users of these devices, seeking to identify why they have chosen to take up these practices, what apps and platforms they use, how they use them and what they do with the personal data that are generated from these technologies. We are interested in exploring issues around identity and self-representation, concepts of health, fitness and the body, privacy, surveillance and data practices and cultures.

The city in which we live and work, Canberra, is an ideal place to conduct this project, as there are many ardent cyclists and runners living here.

See here for our project’s website and further details of the study.

My two new books on unborn humans

Last month both my new books on the topic of the unborn (human embryos and foetuses) were published. One is an authored book, part of the Palgrave Pivot series, entitled The Social Worlds of the Unborn. The other, The Unborn Human, is an open access book that I edited as part of the Living Books about Life series published by the Open Humanities Press.

Both books deal with very similar issues and theoretical perspectives, and therefore complement each other nicely. The Social Worlds of the Unborn has five substantive chapters. The first chapter examines what I call ‘contingencies of the unborn’, drawing on sociological, anthropological, bioethical, philosophical and historical perspectives to highlight the dynamic nature of the ways we think about foetuses and embryos and the debates over the extent of their humanness and personhood. I then go on in the next chapter to discuss technologies for visualising the unborn, such as foetal photography and computer imaging and obstetric ultrasound. These have been particularly important technologies in opening up the uterus to the gaze so that we can see the previously mysterious entities that inhabit this space. I argue that visualising technologies have worked to represent unborn entities as already persons in their own right, autonomous from the maternal body, and indeed as already infants. These images also represent the unborn as beautiful, fragile and vulnerable entities requiring our utmost love and protection, and thus are powerful agents in anti-abortion politics.

In the third chapter of this book I focus on pregnant women’s perspectives on the unborn entities growing within their own bodies. I highlight the ambivalence that pregnant women often feel about this Other body inhabiting their own, as well as their difficulty in coming to terms with their ‘two-in-one’ bodies that depart so radically from the contained, unitary bodily norm. The concept of the ‘good mother’ often precludes acknowledgement that pregnant women may sometimes feel as if their unborn is antagonistic and even parasitic. Yet these feelings are not uncommon in pregnant women, in addition to the more culturally accepted notions of the unborn as precious proto-infants.

The next chapter goes on to examine the dead unborn, including discussion of abortion practices, policies and politics, decisions about the disposal of surplus IVF embryos and the mourning and memorialisation of unborn entities lost in miscarriage or stillbirth. It also looks at bioscientific definitions of the unborn and how working practices in the medical clinic or stem cell laboratory operate to deal with using matter from dead unborn entities. Here again issues concerning judgements about the humanness and status of personhood of various unborn entities are to the fore. I demonstrated that the context in which these entities are created and grow (or fail to develop) is vital to concepts of their value and vitality.

The final substantive chapter examines the concept of the endangered unborn, particularly in relation to how pregnant women are represented as posing a threat to their unborn through ignorance or deliberate negligence. I argue that the increasing humanisation and personalising of the unborn and their representation as precious, vulnerable and as already infants with full human privileges work to position them as more important than the women who bear them, who increasingly as positioned as vessels rather than as individuals with their own rights and needs that may differ from those of their unborn.

The edited book, The Unborn Human, takes up many of these issues. I review the contents of the book in my Introduction (‘Conceptualising and configuring the unborn human‘), showing how each item in the collection contributes to various ways of thinking about, treating, representing, creating or destroying unborn entities. Like the other books in the Living Books about Life series, The Unborn Human is a curated collection of material that is available as open access publications. Some of this material can be viewed via links to the website embedded in the book, while others can be directly accessed under the Creative Commons Attribution licence. This means that all of the articles and other materials included in the book, which range from historical documents to scientific, medical, bioethical, policy, sociological, anthropological and cultural studies articles as well as social and other digital media material such as websites, blog posts and YouTube videos, can be accessed for free (including my introduction using the link supplied above).

Towards a critical sociology of digital health technologies

A recent research interest of mine is the emergence of ‘digital health’ (otherwise known as Health 2.0, Medicine 2.0, eHealth or mHealth) as central to healthcare and public health policies in developed countries. Digital health technologies include using mobile wireless devices and social media to gather data on health-related behaviours or to encourage people to take up health promoting behaviours, using Web 2.0 devices to seek out information on health-related matters and to contribute to this information, telemedicine, digital medical records and disease-monitoring systems.

There are now many articles in the news media and medical and public health literature that enthusiastically promote digital health as ‘revolutionary’ and ‘disruptive’ to traditional approaches to healthcare and public health. As a sociologist, I have sought to interrogate the assumptions underlying discourses on digital health technologies and to identify the social, cultural and political dimensions of the digital health phenomenon. I have recently written several academic pieces about digital health technologies, as well as a number of blog posts.

Two articles have focused on their use as part of health promotion, quantifying the body and self-tracking (see here and here). Another article looks at the concept of what I have termed ‘the digitally engaged patient’ in relation to the employment of digital technologies in recent telemedicine initiatives . I have also written about the commodification of patient experience data uploaded to patient support websites and the use of Donna Haraway’s cyborg theory to theorise digital health. The most recent piece returns to the subject of what I call ‘digitised health promotion’.

One of my central arguments is that despite the representation of technologies as inert, neutral objects participating in the collection of data in the interests of health promotion and medical self-care, from a critical perspective such objects may be viewed as actively shaping the subjects/bodies of those who use them. Technologies discipline and order bodies in certain ways, just as bodies discipline and order technologies. They are not politically neutral, but rather are implicated in a dense web of power relations. Using medical and other technologies to peer inside the body is part of a mentality that assumes that more information about the body is always better.

There are a number of central themes that come together in the critical sociology of digital health phenomenon. These include examination of the technologies themselves that are part of Web 2.0 and the Internet of Things, including ubiquitous computing (devices that are mobile and wireless), wearable devices and embedded sensors in devices, as well as the ‘big data’ that are produced from digital technologies. Other themes are the emphasis on personal responsibility for self-care and self-monitoring in telemedical and health promotion programs, the withdrawal of the state from alleviating socioeconomic disadvantage and the promise of control over the body, disease and expenditure that is regularly articulated in discourses on digital technologies. Also important are the contributions of the discourse of ‘healthism’, or the assumption that good health should be privileged over other priorities in people’s lives, and the lure of techno-utopian and data-utopian discourses generally that promote digital technologies as the means by which good health and financial savings may be achieved. Surveillance, whether voluntary, imposed or coercive, is another central dimension of using the new digital health technologies.

Now that computers are wearable upon and can even be inserted into the body or ingested as pills, and are used as part of medical care and preventive health strategies, a new set of possibilities and limitations have been generated in relation to the ways that we think about and use these technologies. I argue that digital health discourses work to draw attention from the social determinants of health and support victim-blaming of those who are ill or viewed as not successfully managing health risks. They promote the myth that ‘clean’, ‘controlled’ technologies allow containment of the ‘messiness’ of human disease and bodily disorder.

Furthermore, digital health technologies discipline bodies in certain ways and configure a set of obligations concerning acting upon the data that they generate. Privacy and discrimination issues also need to be identified and acknowledged, given that digital monitoring devices potentially allow healthcare providers, health promoters, employers and health insurance companies to gain access to data on users’ bodily functions and activities in fine-grained detail. Greater attention needs to be paid to the moral, political and ethical dimensions of the digital health phenomenon.

Theorising mHealth and the quantified self

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

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

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

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

Living the quantified self: the realities of self-tracking for health

The end of 2012 and the dawning of a new year brought with it a multitude of news reports and blogs on the phenomenon of the quantified self or using self-tracking tools for health promoting purposes. Much hype has been generated around ‘digital health’ or ‘mHealth’ technologies, or mobile digital devices such as smartphones and wearable materials with embedded sensors that are able to connect to device apps or websites and download the data collected. These technologies include thousands of health-related apps for smartphones, tablet computers and iPods that can keep track of the user’s food and alcohol consumption, physical activity, body weight, ovulation cycle, stress levels, mood, sexual activity and many other physical functions and habits. It has been argued that by using such apps the smartphone can become a ‘”soulmate device” that knows your body better than you know it yourself’.

There are also an increasing number of specifically designed devices such as the Fitbit, Jawbone’s Up, Nike Fuelband and Zeo headband and various brands of adhesive patches that are available for self-tracking. All of these are designed to be worn upon the body to automatically collect data on bodily functions such as physical activity, pulse, heart rate, body temperature, calories burned and sleep patterns. Some can be worn 24 hours a day to provide constant readings of biometrics. Digital body weight scales, blood oxygen saturation monitors and blood pressure monitors that link to smartphones are also on the market. To motivate users, some devices include ‘gamification’ strategies. These use built-in reward or docking systems so that points or real money can be collected or paid if various commitments (to regular exercise or weight loss goals, for example) are either met or unmet, as well as websites where one’s metrics can be compared competitively against those uploaded by other users.

Nike+ FuelBand (Photo credit: LoKan Sardari)

The combination of New Year resolutions season, predictions for digital innovation in 2013 and the reporting of the new technologies that were showcased at the 2013 Consumer Electronics Show in Las Vegas has contributed to the recent intensified focus on self-tracking for health reasons. Self-tracking mobile devices, apps and gadgets were reported as the new way of ensuring resolutions to lose weight or engage in more exercise would be accomplished (see here and here). They were frequently mentioned in lists of trends to watch in digital health technologies in 2013 (see here and here). Weird and wonderful devices such as self-tracking devices for dogs to wear to monitor their exercise levels, smartphones that could detect bad breath and other odours and a ‘smart fork’ embedded with sensors that could warn people they were eating too fast all received media attention in the early days of 2013.

I have written elsewhere about the ways in which self-tracking for health and the quantified self movement may be theorised sociologically, drawing attention to some of the ethical, moral and political issues (see here and here for previous blog posts on the topic and here for a lengthy academic article). Little academic research has yet been published on how people are taking up this approach to health promotion as part of their everyday lives. But accounts are beginning to appear in news stories and blog posts that have begun to explore the lived experience of self-tracking.

On the positive side, several self-trackers have reported that they feel more in control of their health using digital devices and have argued that there are many benefits to quantifying the self. Many people have discovered that tracking of their food intake and body weight has allowed them to achieve weight-loss goals. One success story is that of Dan Hon, who has type 2 diabetes and uses the Nike Fuelband and the Fitbit to monitor his physical activity levels as well as a digital blood glucose meter and weight scales. He reported that the combination of these technologies had allowed him to reduce his blood sugar levels to normal and that he had ‘healed myself through data’ (see here for his story). Another user experiencing problems with sleep used a Zeo headband to track his sleep patterns and experimented with taking magnesium supplements, giving up caffeine and changing the lighting in his room to see which of these factors affected his sleep. Using the data downloaded from the headband he eventually worked out how to best achieve a good night’s sleep. Other people with a diverse range of health problems have used self-tracking devices to monitor medical treatments for acute diseases or chronic conditions, evaluate the moods created by eating certain foods, track their alcohol consumption  and many more aspects of their bodily functions, health and illness states. Patients have also been able to ‘crowdsource’ the data they have collected on websites such as PatientsLikeMe and CureTogether, allowing the massing of data for a better understanding of what treatments are effective (see here and here for overviews).

Image via CrunchBase

Also beginning to emerge are accounts by people who have tried self-tracking for health reasons but have become disenchanted with the practice. As these stories demonstrate, the realities of quantifying the self do not always meet expectations. The devices do not share data with each other, so it is impossible to track different activities using more than one device and then produce statistics that combine the data collected. Some users find them inconvenient or uncomfortable to wear. Some people quickly become bored with the effort involved in self-tracking. It has been reported that the devices are often not compatible with some types of smartphones.

Other users who have tried self-tracking for health have suggested that the intense focus on the body that these devices encourage may place too much pressure on oneself, leading to feelings of failure and self-hatred. It has been argued that intense self-tracking may cause ‘cyberchondria’, leading to people becoming unduly anxious about their health state based on the data they collect. Devices may be used by people such as anorexics to facilitate health-destructive behaviours by engaging in too much obsessive self-tracking. Activities such as walking may become viewed through the lens of the self-tracking device rather than for the other pleasures they may bring, as one commentator wrote of his experiences using a Fitbit while visiting Paris. As he noted, ‘the data mind is hard to shake’, even while immersed in the sights and sounds of one of the most celebrated cities in the world.

Privacy issues are a concern as more and more data are collected by self-trackers. The manufacturers of self-tracking devices are beginning to approach workplaces as a site for encouraging people to use them and compete against each other. There are concerns that people may feel pressured into using them to meet employers’ expectations and that employers may use the data. Other critics have questioned what may happen if health insurance companies begin to expect their clients to use the devices if they wish to avoid higher premiums (see here for an account of these issues). The quality and efficacy of health apps and their potential for harming rather than promoting users’ health have also been questioned, given that they are currently not regulated (see here).

Using digital devices to self-track for health reasons is a very new phenomenon. While stories such as those referred to above are beginning to identify both positive and negative dimensions, it is a practice that still requires much more investigation and analysis in the face of all the hype.

Is being fat bad for your health? Obesity sceptics disagree

Obesity Campaign Poster (Photo credit: Pressbound)

For some years now,  obesity sceptics have argued against the mainstream medical and public health perspective on obesity. Writers such as Paul Campos (2004), Michael Gard and Jan Wright (Gard and Wright, 2005; Gard, 2011)  have published closely argued critiques of the obesity science literature. They persuasively identify the many inaccuracies, distortions, misleading assumptions and generalisations made in scientific and epidemiological research which have contributed to the idea that obesity is at ‘crisis’ or ‘epidemic’ levels and that being over the arbitrarily defined ‘normal’ BMI automatically damages people’s health.

Some specific points obesity sceptics make are as follows:

• It is not the case that there are far greater numbers of fat people now compared to several decades ago. While there has been a modest increase in average weight, this does not represent an ‘epidemic of obesity’.
• Life expectancy in western countries has risen, not fallen, despite alleged growing rates of obesity and the supposed life-threatening health conditions caused by obesity.
• There is no statistical evidence that being fat necessarily equates to a greater risk of ill health or disease. Statistics show that only those people at the extreme end of the weight spectrum (the ‘morbidly obese’ in medical terminology) demonstrate negative health effects from their weight. The data show that higher body weight may even be protective of health in older people.
• The epidemiological literature has been unable to demonstrate that significant weight loss improves fat people’s health status. Indeed continual attempts by fat people to lose weight can actually be negative to their health status if it involves extreme diets, being caught in a cycle of losing and gaining weight or poor dietary habits.
• Fatness is often a symptom rather than the cause of ill health and disease.
• There is no consensus from the scientific literature that people in contemporary western societies are less active now than in previous eras: indeed many people, particularly those from the middle-class, are highly physically active.
• No clear association has been found between activity levels and childhood overweight and obesity, or between children’s television watching habits and their body weight.
• Nor have studies conclusively demonstrated that relative levels of physical activity influence health status. Medical research has not been able to show how much exercise should be undertaken and how often to achieve and maintain good health and which diseases are affected or prevented by taking regular exercise.
• It is also very difficult to demonstrate scientifically the relative influence of genes in body weight.

In all these areas there are many contradictory and conflicting findings from research studies, making it difficult to anyone to make confident statements about these issues. As these obesity sceptics point out, many of the generalisations made by obesity scientists and public health experts simply disregard the lack of consistent, clear or conclusive evidence for such statements as ‘obesity is caused by lack of exercise and eating too much’ and continue to reiterate these assertions.

What obesity sceptics present, in essence, is a detailed critique of the ways in which political agendas and pre-existing assumptions shape the reporting and interpretation of medical and epidemiological data relating to body mass. Quite apart of its relevance to debate about whether the obesity epidemic exists and how serious it is, such an analysis is valuable in drawing attention to the work practices and knowledge claims of medical and public health researchers.

The assertions and critiques of obesity sceptics have failed to make an impact on mainstream obesity science, government health policy and anti-obesity public health efforts. Journal articles concerning the dangers of obesity continue to appear in medical and public health journals with monotonous frequency. Alarmist predictions continue to receive attention in the mass media. Governments in western countries have also continued to invest large sums to fund health promotion campaigns seeking to counter obesity. For example, the American ‘Let’s Move’ campaign, directed at controlling childhood obesity, was launched by First Lady Michelle Obama in early 2010, while on the same day President Obama created a Taskforce on Childhood Obesity. The Australian ‘Swap It, Don’t Swap It’ anti-obesity campaign commenced in early 2011. It would seem that there are powerful political and career investments in continuing to ignore the arguments of the obesity sceptics.

References

Campos, P. (2004) The Obesity Myth. New York: Gotham Books.

Gard, M. and Wright, J. (2005) The Obesity Epidemic. London: Routledge.

Gard, M. (2011) The End of the Obesity Epidemic. London: Routledge.