Digital health promotion: possibilities and limitations

 

Pinterest health

Health and fitness content on Pinterest

 

On Tuesday I am giving an invited presentation at an event organised by VicHealth on the theme of ‘Harnessing the Power of Digital Technologies’. Some of the issues I’ll be focusing on include covering the different ways in which digital devices and software are used for health promotion, and what the social issues are. I’ll be drawing on my recent and current research projects looking at the social aspects of how people use digital health and self-tracking technologies (see my blog post summarising the findings of these projects here).

The critical sociological approach I’ll be advancing is discussed in a range of my publications over the past few years. The most recent of these publications include my book Digital Health: Critical and Cross-Disciplinary Perspectives, a chapter on wearable devices (available OA here), an article on what health professionals and healthcare consumers see as valuable about digital health and what its future may be (available OA here), a special journal issue I edited on self-tracking, health and medicine (the editorial for this is OA here) and an article reporting my research project on the use of social media by healthcare workers (available OA here).

Here are some of the points I’ll be making in my talk:

Among public health and health promotion professionals, social media campaigns and dedicated websites are popular forms of communicating with target groups. These approaches often take an individualistic and to-down approach, using old-style paternalistic health education and social marketing models of behaviour change and applying them to the new media contexts. They often fail to recognise that people are spontaneously and actively searching for information about health and medicine on the internet and using social media and apps to generate and share this information.

Health promotion professionals are competing for consumer engagement with a digital health ecosystem in which the commercial/corporate sector offers a far more compelling range of products. It was estimated last year that there are over 325,000 health and medical apps available on the major app stores. Social media are now a key site for the dissemination of health-related news and information. People use Facebook, Instagram, Tumblr, Twitter and Pinterest to access and share information about health, medical care and physical fitness. A large range of blogs and discussion forums have been established for people to have a say on health-related matters and respond to others. Wearable devices like Fitbit and Apple Watch provide opportunities for people to monitor and measure their health and fitness levels.

Visual media have become important in people’s engagements online, including selfies, memes, GIFs and videos. YouTube offers countless videos made by consumers about their health and fitness experiences and insights. ‘Healthy lifestyle’ influencers on platforms like Instagram and YouTube have a huge reach and impact, particularly for young people. Hashtags like #fitspo, #cleaneating, #fitnessaddict, #iquitsugar, #wellness and #weightlossjourney are used to organise content and attract like-minded audiences. Communities that challenge mainstream health promotion messages and seek to promote resistant modes of embodiment use hashtags like #badfatty, #thinspo, #proana, #selfinjury and #blithe (used for content about self-harm, eating disorders and depression), particularly on Tumblr.

My research on how public health professionals use social media found that they recognised that these communication channels were important for consumer engagement and also found them beneficial to connect with other professionals working in their fields. However, they experienced many constraints such as lack of institutional knowledge about how best to use social media, rules about not using social media in the workplace, lack of access to the internet, or peers disapproving of social media. If they were working in a contentious or sensitive area of public health, these professionals had to consider the possibility of being attacked by members of the public on social media, or inadvertently saying the wrong thing publicly.

There is a need for a social perspective on digitised health promotion. The different ways in which social groups use and respond to digitised health promotion need to be considered (for example, attributes such as gender, age, social class, education level, ethnic/racial background, health status and geographical location). My research identifies several key differences between the different groups I have included. For example, women with young children use Facebook a lot for sharing information about pregnancy and childcare and to arrange in-person meetings. Young people, on the other hand, prefer YouTube, Instagram and Snapchat to access and share health information. My project on self-tracking cyclists found that they loved to use platforms like Strava to share their data and compete with and provide support to each other. In contrast, my project on everyday self-trackers, who monitored a range of attributes about their bodies and lives, and another of my projects on women’s use of digital health technologies, found that very few were interested in sharing their data with others beyond family members or their doctors.

Personal data privacy and security are important issues when discussing how digital technologies can be used for health promotion. Across my research projects, there was very little awareness of or concern about how internet companies and app developers collect, use and share people’s often very sensitive health-related information when they engage with these technologies. This included public health professionals, who were not considering these issues in relation to their work-related activities.

Some findings from my research on Australians’ use of digital health and self-tracking technologies

Today I am giving a keynote presentation at the Australian Telehealth Conference 2018 in Sydney. I am talking about the findings of four empirical projects I have conducted over the past three years on Australians’ use of digital health and self-tracking technologies.

Here are some of the key findings I will be discussing.

Women’s Use of Apps and Other Digital Media for Pregnancy and Parenting Project

This project involved two parts: an online survey completed by 410 women around Australia and a focus group study involving women living in Sydney. All participants were either pregnant or had at least one child aged 3 years or under at the time of the research.

The participants were keen users of Google Search, constantly using it to find information. They also often used pregnancy apps (three-quarters of the survey participants) and parenting apps (half of the survey participants). Facebook was popular as well, especially for establishing local mothers’ groups that included opportunities to meet face-to-face and share local knowledge. The participants valued websites and online discussion forums as ways of seeking and providing support 24/7. They sought information, reassurance and social connections through these digital media. For many women, digital media were life-lines at times when they were struggling with loneliness, anxiety and the significant demands of caring for babies and young children.

Publications from this project can be found here, here and here.

Self-tracking Cyclists Project

This project involved female and male commuting cyclists in Canberra and Melbourne who regularly used digital technologies (bike computers, apps, wearable devices, cycling platforms) to track their rides. We used GoPro cameras worn on the cyclists’ helmets to videotape one of their cycling commutes, and interviewed the participants while watching the video together. We were interested in how they incorporated the use of digital self-tracking into their everyday routines, and how they engaged with the data generated by these practices.

We found that most of the cyclists enjoyed tracking their rides to monitor their fitness or speeds, to compete against other cyclists or to document their personal bests on platforms like Strava. Some responded to their data in real-time as they cycled, particularly if they used a bike computer they could easily consult while in motion. These people found self-tracking to be motivating, giving them confidence and feelings of accomplishment when they could see that their speed or fitness were improving.

Publications from this project can be found  here, here, here and here.

Australian Self-Trackers Project

This project involved semi-structured telephone interviews with women and men across Australia who identified as a ‘self-tracker’ for any reason, using any kind of method, digital or non-digital.

The findings from this project demonstrated that while digital self-tracking technologies were popular, especially computer spreadsheets and apps, many people were using the time-honoured paper-and-pen form of recording their information, or even just committing details to memory. It was common for people to use a combination of these methods to track a range of indicators. The most popular aspects they were tracking were food/nutrition, physical fitness or activity levels and body weight, but tracking finances, blood pressure, sleep, work productivity, social relationships, medication, home energy use, chronic health conditions, moods and alcohol were also common. Unlike the self-tracking cyclists, few of these participants were interested in sharing their data with others, and few were motivated by competitive challenges. They saw self-tracking as a largely private endeavour, undertaken to  collect information as a way of ‘being responsible’ and exerting control over their health and lives.

The production of publications from this project is still in progress. One book chapter has been generated from it thus far and can be found here.

Australian Women and Digital Health Project

This project involved a combination of focus groups, face-to-face semi-structured interviews and telephone interviews with Australian women across a range of age-groups. They were asked to talk about which kinds of digital health technologies they used and which they found most valuable and useful.

Here again, the importance of Google Search as a tool to find health information was to the fore. Almost every participant said that they regularly googled to search for information.  They also used websites regularly for health information, often directed to them by searching online. In-person interactions with doctors or other healthcare professionals as well as family and friends were still important sources of health information, but the opportunity to go online at any time was highly valued by these participants. Many searched for health information on behalf of their family members (partners, children – even adult children – or elderly parents) as part of their familial caring roles. Traditional media (books, television, radio) were hardly mentioned at all as a source of health information, although pamphlets were still consulted quite often when women were waiting to see the doctor. These women valued the access they had online to international sources of information, but still placed a lot of importance on being able to find Australian-based information and information that was specific to their local area. It was notable that none of these women used a fitness platform like Strava, although calorie-counting apps and Fitbits were quite popular.

Analysis from this project is in progress.

Findings from across the projects

  • Websites and search engines (particularly Google Search) remain very important and highly-used sources of online health information.
  • The broader ecosystem of technologies, including non-digital as well as digital, needs to be acknowledged.
  • People are still not generally interested or concerned about who can access their personal health data generated from their online interactions or app use.
  • When participants were asked what their ideal digital health or self-tracking technology would be, the most common responses were for tools that could be readily customised and personalised, or which could bring a lot of information or functions together in the one place. This could be an app or a website/platform.
  • Factors such as people’s age, gender, caring responsibilities, working conditions, state of health, whether they are living with a disability, demands on their time and relationships and interactions with other people (both in person and online) are important contributors to their lived experiences of digital health and self-tracking technologies.
  • The biographical features of people’s lives also emerged as central: such turning points as hitting a landmark birthday, the birth of children, or developing a chronic illness were key factors in people making changes in their lives related to their use of digital media and devices for health.

Frankenstein, Black Mirror, and personal data

Frankenstein

 

This year marks the 200-year anniversary of the publication of Mary Shelley’s classic Gothic novel Frankenstein, or the Modern Prometheus. This novel has become a cultural icon, largely due to the figure of the creature, the strange monster cobbled together from stolen body parts and reanimated by the scientist Dr Victor Frankenstein. Dr Frankenstein is obsessed with creating life from non-living matter. He eventually creates a humanoid creature which resembles a human in many aspects, although it is much larger and has an unearthly appearance that marks it as clearly not-human. Frankenstein is repulsed by the creature, which escapes his laboratory. The creature, for its part, finds its own appearance hideous, and experiences rejection from the people it encounters because it looks so strange and frightening. Eventually the creature turns murderous, wanting to wreak vengeance on its creator for its lonely and disturbed existence.

The story of Frankenstein’s creature and its creator is a dark moral tale, in which Shelley vividly speculates on the ways in which humans’ ambitions to tinker with nature can go badly wrong. A central theme in this moral tale is the figure of the creature itself, in its eerie, almost-human-like appearance and sensibility. The creature has human feelings and emotions, needs and desires, but it looks too strange and monstrous to be able to be accepted by humans, and its rage and despair eventually overwhelms it.

The novel raises important ethical and ontological questions about what it means to be human, how novel technologies can disturb the definition and meaning of the human, and how scientific innovation can threaten humanity. It demonstrates the affective power of the more-than-human world, when parts of humans come together in new ways to create new forms of human – or almost-human – life.

These days, a range of speculative fiction accounts represent digital technologies as creating monstrous new formations of humanity. Thus, for example, many episodes of the dystopian television series Black Mirror centre on the ways in which people’s digitally monitored and archived data can be used to replicate, manipulate, observe, control or betray them. In the most obvious reference to Frankenstein’s monster, in ‘Be Right Back’ (series 2), a grieving woman uses a digital service that draws on the archive of her dead husband’s online interactions to first talk to a digitised version of him on the phone, then create him in the flesh. Although at first she finds it comforting to have this post-death replicant of her partner with her, she soon finds him disturbing and annoying, as he is not able to properly display the human quirks of the real man she knew and loved. In ‘Arkangel’ (series 4), a child is relentlessly monitored by her anxious mother using a digital device that reveals the girl’s perspective on the world and monitors biometrics such as her heart rate and adrenaline levels. Once the girl reaches adolescence and becomes aware of the privacy-invasion that she is subjected to, she is driven to anger and violence against her mother because of the violation she feels. In ‘Crocodile’ (series 4), a device is used to access memories, again with violent consequences when a woman feels as if she can no longer keep her secrets. In ‘Nosedive’ (series 3), people use their smart devices constantly to rank and rate each other, with the resultant data affecting their life opportunities.  ‘Playtest’ (series 3) depicts a computer game-like scenario, when again people’s memories are accessed by a digital device to make the game as frightening as possible by invoking their deepest fears. ‘The Entire History of You’ (series 1), involves a man wracked by jealousy who forces his partner to ‘rewind’ her memories to prove her infidelity, which then destroys their relationship.

All of these Black Mirror episodes (and several others in the series) depict the nightmarish ways in which personal data can be used to monitor, frighten, humiliate and punish people, particularly in imagined scenarios when digital devices can be used to constantly record, preserve and ‘download’ these data. Like Frankenstein’s monster, these personal data are new forms or extensions of human life. More than data doubles or doppelgangers, these personal data have their own liveliness, their own worlds, that exist beyond the purview of the humans who created them. They are constantly changing and moving into new formations. I have elsewhere suggested that we can think of personal digital data as companion species, living with and co-evolving with us.

In their more-than-human presence, personal data assemblages have the potential to evoke the ‘uncanny valley’, or the affective responses from humans to objects they have created that are marked by feelings of eeriness, uncertainty, discomfort, and a sense that something is ‘not quite right’. Humanoid robots are often described as evoking uncanny valley responses, but they can occur in response to other digital as well as non-digital humanoid artefacts, such as masks, dolls, puppets, zombies, human prosthetics, characters in films generated by computer graphic manipulation (sometimes referred to as ‘digital actors’) and avatars in computer games.

The representations of personal data and their consequences in Black Mirror, I would argue, go some way to highlighting the uncanny and potentially uncontrolled, and in some cases, disastrous implications of generating and storing these pieces of information about people. From the ambivalence of the uncanny valley to the monstrosities of data betrayals, the near-future of personal data is imagined in unsettling scenarios.

Photo credit: Flickr image by Robert Couse-Baker, CC By 2.0

Critical art and design projects about digital data

 

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For a while now, I have sought out the work of artists and designers who are working on interesting critical projects related to digital data, particularly personal data (as this is one of my main research interests). I have discussed some of this work in several of my publications, including my book on the sociology of the quantified self.

A recent tweet asking the Twitter ‘hive mind’ whose work they knew about generated many more additions (thank you to those who contributed).

Here’s a list that I have subsequently put together – I am sure it is by no means comprehensive, but at least it’s a start!

Autonomous Tech Fetish

Max Dovey

Dear Data

Lucy Kimbell

Thecla Schiphorst

Institute of Human Obsolescence

Tom O’Dea

Erica Scouti

Critical Interface Politics Research Group

Tega Brain

Pip Thornton

Data Materialities

Melanie Gilligan

Mitchell Whitelaw

David Benque

Zach Blas

James Bridle

Laurie Frick

Ted Hunt

Poetry in Data

Data Cuisine

The Center for Genomic Gastronomy

Grow Your Own: Life After Nature (exhibition)

panGenerator

Benjamin Grosser

Superflux

LingQL

Ellie Harrison

Heather Dewy-Hagborg

Julian Oliver

Gordan Savicic

Jennifer Lyn Morone

Brian House

Auger Loizeau

 

Photo credit: Fee Plumley: CC By 2.0 (found on Flickr)

My 2017 publications

Books

Lupton, D. (2017) Digital Health: Critical and Cross-Disciplinary Perspectives. London: Routledge.

Lupton, D., Mewburn, I. and Thomson, P. (eds) (2017) The Digital Academic: Critical Perspectives on Digital Technologies in Higher Education. London: Routledge.

Lupton, D. (editor) (2017) Self-Tracking, Health and Medicine: Sociological Perspectives. London: Routledge.

Special journal issues edited

‘Health, medicine and self-tracking’, Health Sociology Review (volume 26, issue 1), 2017 (also published as a book)

‘Digital media and body weight’, Fat Studies (volume 6, issue 2), 2017

‘The senses and digital health’, Digital Health (volume 3), 2017

Book chapters

Lupton, D. (2017) 3D printed self replicas: personal digital data made solid. In McGillivray, D, Carnicelli, S. and McPherson, G. (eds), Digital Leisure Cultures: Critical Perspectives. London: Routledge, pp. 26—38. (PDF Lupton 2017 3D self-replicas chapter).

Gard, M. and Lupton, D. (2017) Digital health goes to school: digitising children’s bodies in health and physical education. In Taylor, E. and Rooney, T. (eds), Surveillance Futures: Social and Ethical Implications of New Technologies for Children and Young People. London: Routledge, pp. 36—49. (PDF Gard Lupton 2017 digital health goes to school chapter)

Lupton, D. (2017) Digital bodies. In Silke, M., Andrews, D. and Thorpe, H. (eds), The Routledge Handbook of Physical Cultural Studies. London: Routledge, pp. 200—208. (PDF Lupton 2017 digital bodies chapter)

Lupton, D. (2017) 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. (PDF Lupton 2017 personal data practices in the age of lively data chapter)

Lupton, D., Mewburn, I. and Thomson, P. (2017) The digital academic: identities, contexts and politics. In Lupton, D., Mewburn, I. and Thomson, P. (eds), The Digital Academic: Critical Perspectives on Digital Technologies in Higher Education. London: Routledge, 1-19. (PDF Lupton Mewburn Thomson 2017 digital academic chapter)

Lupton, D. (2017) Cooking, eating, uploading: digital food cultures. In LeBesco, K. and Naccarato, P. (eds), The Handbook of Food and Popular Culture. London: Bloomsbury. (PDF Lupton 2017 cooking eating uploading chapter)

Journal articles

Lupton, D. and Williamson, B. (2017) The datafied child: the dataveillance of children and implications for their rights. New Media & Society, 19(5), 780—794.

Pink, S., Sumartojo, S., Lupton, D. and Heyes Labond, C. (2017) Mundane data: the routines, contingencies and accomplishments of digital living. Big Data & Society, 4(1), online, available at http://dx.doi.org/10.1177/2053951717700924

Thomas, G., Lupton, D. and Pedersen, S. (2017) ‘The appy for a happy pappy’: expectant fatherhood and pregnancy apps. Journal of Gender Studies, online ahead of print: doi:10.1080/09589236.2017.1301813

Lupton, D. (2017) How does digital health feel? Towards research on the affective atmospheres of digital health technologies. Digital Health, 3, online, available at http://journals.sagepub.com/eprint/ZCuMrRHMP3RsH9Z8f9v7/full

Lupton, D. and Michael, M. (2017) For me, the biggest benefit is being ahead of the game’: the use of social media in health work. Social Media + Society, 3(2), online, available at http://dx.doi.org/10.1177/2056305117702541

Lupton, D. (2017) Digital media and body weight, shape and size: an introduction and review. Fat Studies, 6(2), 119-134.

Lupton, D. and Michael, M. (2017) ‘Depends on who’s got the data’: public understandings of personal digital dataveillance. Surveillance and Society, 15(2), 254—268.

Lupton, D. (2017) ‘It just gives me a bit of peace of mind’: Australian women’s use of digital media for pregnancy and early motherhood. Societies, 7(3), online, available at http://www.mdpi.com/2075-4698/7/3/25/htm

Lupton, D. and Maslen, S. (2017) Telemedicine and the senses: a review. Sociology of Health & Illness, 39(8), 1557-1571.

Lupton, D. (2017) Feeling your data: touch and making sense of personal digital data. New Media & Society, 19(10), 1599-1614.

Lupton, D. (2017) ‘Download to delicious’: promissory themes and sociotechnical imaginaries in coverage of 3D printed food in online news sources. Futures, 93, 44-53.

Lupton, D. (2017) Towards design sociology. Sociology Compass, online ahead of print: doi:10.1111/soc4.12546

Lupton, D. (2017) Digital health now and in the future: findings from a participatory design stakeholder workshop. Digital Health, 3, online, available at http://journals.sagepub.com/doi/pdf/10.1177/2055207617740018

Pink, S., Sumartojo, S., Lupton, D. and Heyes Labond, C. (2017) Empathetic technologies: digital materiality and video ethnography. Visual Studies, 32(4), 371-381.

Editorials

Lupton, D. (2017) Towards sensory studies of digital health. Digital Health, 3, online, available at http://journals.sagepub.com/doi/abs/10.1177/2055207617740090

Lupton, D. (2017) Self-tracking, health and medicine. Health Sociology Review, 26(1), 1—5.

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

(Edited to note that this editorial has now been published in the journal, and is available open access here.)

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.