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.

 

 

 

Using graphic narratives for research translation and engagement

Today I attended a workshop to learn how to draw graphic narratives — in effect, comic strips. I was interested in learning this technique as research translation and engagement tool. I thought that it could be a fun way to visually represent findings from a research project. The method can also be used to plan research projects, as an alternative to tools such as mind-mapping or concept-mapping. The idea is that using a comic-strip format helps to simplify issues and present them in narrative formats.

We focused in the workshop on the best way to represent emotional states using simple drawing techniques. We started with drawing Donald Trump’s grumpy face using several different methods. Here’s the last Trump drawing I produced. We only had a minute to draw this one.

img_0772.jpg

 

Then we moved on to practising drawing different facial expressions to convey emotion. Here I am working hard on this task.

IMG_0775 (2)

 

We finished the workshop with a big task, which involved drawing a comic strip on a topic we had chosen. I decided to try and represent some research findings from a current project I have been analysing interview data from: on young people’s use of digital health. The project’s findings showed that young people constantly google health information and appreciate learning about the experiences of other young people, so that they feel less alone. YouTube is one source where they can find other young people talking about their health and illness experiences. But young people are also willing to seek medical advice if they feel this is needed. I tried to convey these key findings in my comic strip.

IMG_0778

Ideas for participatory arts/design activities with a digital health focus

I’m currently interested in innovative and creative ways of conducting research on people’s use of digital health technologies. (See my posts on design sociology here, here, here and here, and a report using these methods for a stakeholder workshop here.)

Here’s some ideas I’ve put together, some of which I have tried and others of which I plan to try soon.

Mapping the service ecology

What works?

  • Each participant writes on a card, answering the question …. Think about a time you used a digital device (smartphone, tablet, desktop, laptop, health monitoring device, wearable device etc) for health or fitness-related purposes? What was it? What did it do? What did you like/dislike/find useful/useless about it?

Then share their experience with the group.

Future digital health? ‘What if? scenario …’

  • Each participant writes on a card, answering the question …. Think about an object or service you would like to see designed that would help people prevent or manage illness and disease. It can be digital or not digital. It can be anything you can imagine – something that is purely science fiction, or something that perhaps could realistically be invented. What is it? What does it do? What does it look like? Who would use it? Who wouldn’t use it?
  • Write a brief scenario outlining an example of someone using this technology to promote their health.

Then share this idea with the group.

This will develop two catalogues of devices: what works, and future directions. This could involve presenting this information in a number of formats: sketches or cartoons, film scripts, personas, written scenarios etc.

Inspiration cards

These are a set of cards that can be used to inspire conversation and ideas in workshop.

E.g. I’ve created ‘Blood, Sweat, Tears … Digital’ cards for a digital health workshop. They can be found here: Blood, Sweat, Tears … Digital inspiration cards.

Collages

Give participants materials (pens, paper, glue, images) to make collages on a theme, expressing their thoughts and feelings. They can write words or draw images on the collage as well. They then present their collage to the group, explaining the choices they have made.

E.g. Make a collage showing how using digital technologies make you feel.

Story completion

Provide an opening to a story and ask the participants to complete it.

E.g.

“X decided they wanted to try an app to improve their health. They went to the Apple App Store and searched the health and fitness section …. [What happened next?]

“X decided to buy a fitness tracker to improve their health and physical fitness. They took it home and tried it on …. [What happened next?]

 Body mapping, more-than-human mapping, time-lines, sensory mapping (smell, sound, taste etc).

E.g. large sheets of paper with a blank outline of human figure in the centre. Participants asked to draw on the figure and around the figure, showing sensations, feelings, emotions concerning their health and fitness. Make links to other people, other living things (e.g. pets) and to non-living things (built environment, bikes, cars, digital technologies). Then explain their maps to other participants.

E.g. Draw a map of their life (or a typical person’s life) with a time-line showing how that person would use digital technologies/be tracked by digital technologies that can monitor/measure/reveal aspects of their bodies and health – how would this person access or use this information? How would other people access or use this information?

Memory elicitation

E.g. Think about the last time you went online to find information about a health or wellbeing topic. Write about what you looked for, what information you found, and how you acted (or disregarded) the information. Do you remember any emotions or physical sensations that were part of this experience?

Photo elicitation

E.g. ask people to use their smartphones to take photos of them using digital devices in the usual places. These can be added to timelines, maps etc. Or just record them talking about the photos and their practices.

Personas

The participants are asked to generate profiles about archetypal users of technologies. They give them names, describe their sociodemographic characteristics, sketch them and generate a short narrative describing their life, goals and behaviours related to the topic in question (e.g. use of a specific digital technology).

Make your own health app

Ask people to create an app store page for an app they have invented for health purposes. Ask them to give the app a name, write a promotional blurb for it (What will it do? What is so great and new about this app? Why should people download it onto theirphones?). Include some sketches of screenshots for the app, just like on the app stores.

Digital storytelling

Participants make short films using smartphones or other mini digital cameras to tell a narrative – could be autobiographical. Uses music and voice-overs as well as images, including art-work, photos or video footage. Stories can be created as a group exercise and shared with the group.

E.g. Participants make a film about their use of health apps or wearables and share with the group.

Using a feminist materialism approach in empirical analysis

New feminist materialism theories potentially offer a foundation for exciting, innovative and creative ways to research health-related experiences from a more-than-human perspective. Donna Haraway, Karen Barad, Rosi Braidotti and Jane Bennett are among the most influential scholars in feminist new materialisms. These scholars’ writings are perhaps most inspiring for their insistence on emphasising the vitalities, perversities and vibrancies of human-nonhuman assemblages. Theirs is an affirmative ethics and politics, which celebrates the renewal and liveliness of the capacities that these assemblages generate. (See an earlier post on key approaches in new materialisms.)

A major difficulty with current feminist materialism empirical work is that a methodology for how to go about conducting it is often described in very vague terms: if indeed it is described at all. In the attempt to develop a clearer understanding of how researchers can take up and think with feminist materialism theory in qualitative health research, in this post I outline some approaches I have developed when conducting analyses of the social impact and lived experiences of digital health technologies (for example, health-related mobile phone apps, wearable monitoring devices, social media platforms and online discussion forums).  This is presented as a series of propositions and key questions that I have found inspiring to creatively think with rather than as a definitive ‘cook-book’ of methods. My approach incorporates both reflective and diffractive methods, depending on the research questions and materials I am working with. While post-qualitative and diffraction researchers sometimes overtly eschew what they view to be the overly-prescriptive approach of attempting to find themes or discourses in research materials, I would argue that this approach can be valuable, particularly if the research materials are voluminous.

These propositions and questions have been drawn from my reading of feminist materialism and other new materialisms theory, in conjunction with my review of and engagement with how other social researchers have taken up materialist approaches as I have discussed above. They can be used in relation to many kinds of social research material, including survey responses, media artefacts, art works and performances, interviews, ethnographic observations, policy documents, autoethnographies and many more. They can work to inspire and provoke ideas when formulating research approaches and analysing research materials.

Propositions

  • Research focuses on understanding and mapping ontologies of the ‘human’ (understood as a category that is difficult to define and may include ‘more-than-human’, ‘posthuman’, ‘transhuman’ and other varieties)
  • Human subjects are unstable and emergent knowing, sensing, embodied, affective assemblages of matter, thought and language
  • Humans are part of and inseparable from more-than-human worlds
  • Humans come together/gather with nonhumans to configure constantly changing assemblages
  • These assemblages generate relational connections and affective forces and agential capacities
  • Together, these connections, forces and capacities constitute thing-power
  • Because of the constantly changing nature of these assemblages, there are possibilities for change, resistances or improvisations, or for thinking otherwise
  • Power is transitory as it is enacted within and between assemblages
  • Power is both constraining and enabling
  • All matter has an agential capacity to affect and be affected
  • Researchers are part of the research assemblages they are addressing
  • Analyses are only ever partial, the results of specific agential cuts or interpretations of the research materials.

These propositions can be taken up in many different ways in more-than-human research. They can be developed into a series of key research questions that can be used to guide the ways in which empirical research is conceptualised and carried out, including the choice of how to approach the collection of research materials and their analysis. The following key research questions are some that I have developed for my studies on digital health.

 Key research questions for inquiries into digital health

  • What are the key humans and nonhumans, practices, imaginaries, assumptions and discourses operating across different spaces and sites relating to digital health?
  • What conditions of action and possibility do digital health technologies and their developers, promoters and users establish?
  • What can bodies do when coming together with digital technologies?
  • How are health, illness and healthcare configured and enacted?
  • How do humans incorporate and improvise with digital health technologies?
  • What relational connections, affective forces and agential capacities are generated?
  • What is the thing-power of these assemblages?
  • How is this thing-power constraining or enabling?
  • What are the potentials for thinking or doing otherwise?

Research materials

In a more-than-human approach to critical social analysis, many kinds of research materials can come under investigation: not only human bodies, but those of other living things, as well as non-living objects, spaces, places and atmospheres. In the context of studies of digital health technologies, these are some possibilities (among many): human bodies (or parts of them – organs, blood, sweat, tears, bones, limbs, skin, gametes, foetuses), nonhuman animals, policy documents, news articles, journals, online patient support networks, websites, search engines, telemedicine technologies, social media content (status updates, tweets, likes, shares, hashtags), photographs, television programs, films, videos, audio recordings, digital memes, GIFs, robots, hospitals, clinics, waiting rooms, homes, furniture, clothing, wearable devices, apps, mobile devices, video games, sounds, smells, tastes, haptic sensations, digital datasets, art works, design artefacts, heart pacemakers, continuous glucose monitors, cities, rural landscapes, air, earth, water, sunshine … the list is infinitely expandable.

Examples

I have published some articles recently that apply these approaches to empirical research materials. These can be found open access at the links below:

  • ‘”I just want it to be done, done, done!” Food tracking apps, affects and agential capacities’ (here)
  • ‘Vitalities and visceralities: alternative food/body politics in new digital media’ (here)
  • ‘”A much better person”: the agential capacities of self-tracking practices’ (here)
  • ‘Wearable devices: sociotechnical imaginaries and agential capacities’ (here)
  • ‘The more-than–human sensorium: sensory engagements with digital self-tracking technologies’ (here)
  • ‘Vital materialism and the thing-power of lively data’ (here)

 

 

Fat 2nd edition now published

Fat second edition

 

The second edition of my book Fat has now been published, with a great new cover. This version is twice as long as the first edition. Each chapter has been revised and updated and there is a lot more material in the new edition on how digital material represents fat bodies (for example, memes, GIFs, YouTube, hashtags, selfies and social media platforms such as Tumblr, Twitter and Instagram).

My author’s preface to the second edition is below. The link to the book on Google Books is here, which provides a preview of more content.

The first edition of Fat was completed in 2012, a time at which academic interest in understanding the discourses, practices and politics around fat bodies had been intensifying for some years. Several years later, this topic of study remains a fulcrum where various issues and controversies concerning identities and embodiment converge and intensify. To some extent, the panic about the so-called ‘obesity epidemic’ has died down, perhaps due to the news media losing interest and other health issues receiving policy attention. Meanwhile, the views of fat activists have made greater ingress into public debates about obesity; if remaining subject to controversy or denial. Some of the topics I covered in the first edition have become more complex, with new research paying greater attention to the intersectoral aspects of fat embodiment: how social class, ethnicity or race, sexual identity, age and geographical location shape experiences. Further discussion has sparked up around the question of who can speak about or advocate for fat people or engage in critical analyses of obesity politics – must they be fat-identifying people or can others participate in these debates?

Since I wrote the first edition, as part of a turn towards the visual in popular culture, the representation of human bodies of all shapes and sizes have received greater levels of coverage in new digital media forums. These media offer many more opportunities for self-representation and for body positive and fat activists to draw attention to their causes. However, the fit and thin body continues to dominate in these forums as the ideal body type, often around the ‘fitspiration’ label. Social media allow the vilification and stigmatizing of fat people to intensify and be more easily distributed to ever-larger audiences. New digital media and devices promote a culture of intensified self-monitoring and measuring of bodies, and comparing them against norms. Many more apps and wearable devices have come onto the market, aimed at encouraging and helping people to count calories and track their physical activity and body weight in the interests of conforming to these ideals. These media, therefore, have made bodies of all sizes ever-more visible and subject to private monitoring and public display. These issues and topics all receive attention in this second revised edition.

 

Using feminist materialism to analyse app use

food-apps1.png

I’ve been working with feminist materialism theories to understand how people take up and engage with digital media such as apps, social media and wearable devices. I’ve just had an article published, drawing from the Australian Women and Digital Health Project, which draws on a feminist materialism approach to present six vignettes from participants about their use and non-use of food tracking apps.

Here’s the abstract – the entire article is available open access here.

Food-tracking apps constitute a major category of the thousands of food-related apps now available. They are promoted as helping users monitor and measure their food consumption to improve their health or to lose weight. In this article, I present six vignettes drawn from interviews with Australian women about their use and non-use of food-tracking apps. The vignettes provide detailed insights into the experiences of these women and their broader sociocultural and biographical contexts. The analysis is based on feminist materialism theoretical perspectives, seeking to identify the relational connections, affective forces, and agential capacities generated in and through the human-app assemblage. The vignettes reveal that affective forces related to the desire to control and manage the body and conform to norms and ideals about good health and body weight inspire people to try food-tracking apps. However, the agential capacities promised by app developers may not be generated even when people have committed hope and effort in using the app. Frustration, disappointment, the fear of becoming too controlled, and annoyance or guilt evoked by the demands of the app can be barriers to continued and successful use. Sociocultural and biographical contexts and relational connections are also central to the capacities of human-app assemblages. Women’s ambivalences about using apps as part of efforts to control their body weight are sited within their struggles to conform to accepted ideals of physical appearance but also their awareness that these struggles may be too limiting of their agency. This analysis, therefore, draws attention to what a body can and cannot do as it comes together with food tracking apps.

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.

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)

Second edition of my book Fat out soon

I have revised and significantly expanded my book Fat (it is now double the length) for its second edition, due to be published mid-year. The book now includes much more material on new digital media and devices, and how they are used to contain, control and portray fat embodiment (often in very negative ways).

Here’s an excerpt from new material I have added to my chapter addressing the transgressive fat body, focusing on memes, GIFs and stock images.

My Google search for ‘fat memes’ found memes that not only stigmatize fat bodies, but are blatantly abusive and often cruel. Just some examples I came across include unflattering images of fat people with texts such as ‘I’m fat because obesity runs in my family. No-one runs in your family’, ‘I’m lazy because I’m fat and I’m fat because I’m lazy’ and ‘Sometimes when I’m sad I like to cut myself … another slice of cheesecake’. When I looked for ‘fat’ GIFs on the GIFY platform, here again were many negative portrayals of fat people, including cartoon characters like Homer Simpson as well as real people, again engaging in humiliating bodily performances. Many of these GIFs showed people jiggling their abdomens or dancing to demonstrate the magnitude of their flesh, belly flopping into swimming pools, eating greedily, smeared with food and so on. Here again, fat white men predominated as targets of ridicule.

Many companies now offer stock images for others to use to illustrate news articles, blog posts or reports. Searching for stock images online for ‘fat people eating’ returns a series of photographs and drawings that invariably depict the types of food consumed by fat people as archetypal high-calorie, fat-laden or fast food. Fat women, men and children are shown biting into or gazing at foods such as hamburgers, pizzas, French fries, fried chicken or cream cake, often with a look of greed on their faces and reclining on an over-stuffed armchair or sofa. Some of these people are scantily dressed or wearing clothes that reveal their large stomachs. One image even transposes a fat man with a hamburger, so that his body becomes the hamburger, topped with his head. Another depicts a hamburger as a hungry beast with a gaping maw consuming a man so that all that can be seen of his body is his legs. Some people are shown with links of sausages around their necks. The words used to describe these images are telling, as in these descriptions: ‘photo of a fat couch potato eating a huge hamburger and watching television’, ‘overweight woman greedily biting sweet cake’.

These types of images emphasize the enticements offered by foodstuff that are portrayed in popular and medical cultures as ‘unhealthy’ and ‘fattening’, pandering to greed and self-indulgence. These foods are depicted in some extreme cases as overwhelming human bodies, both in terms of expanding the size of bodies (and particularly of bellies) and in rendering humans helpless and devoured by their lust for these foods. It is as if these foods are controlling humans through the intensity of people’s desire to consume (and be consumed by) them.

Similar sentiments and images can be found in memes about food, regardless of whether the people represented in them are fat or not. These memes often display a high level of ambivalence about experiencing the desire for the ‘wrong’ foods, the pleasure of eating them and the guilt or self-hatred that may result from indulgence. Such food memes may depict large helpings of ‘junk’ foods with people viewing them with hungry expressions. Others dispense with any images of food itself, and simply show people looking eager or happy, and words such as ‘When people ask when I want to eat. Every day. All day. Anywhere. Anytime’, or ‘I’m on a seafood diet. I see food and eat it.’ Animals (especially cats) are used to stand in for people, as in the meme showing a cat desperately clawing its way through a venetian blind and the words, ‘Did somebody say food?’, and another featuring a close-up of a cat with its mouth stuffed with food, captioned ‘I regret nothing. Nothing.’ In these memes, whether or not food is shown, the dominant feelings that are expressed are the insatiable longing for food and the lack of control people have over their appetites, to the point that they are overwhelming.