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 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)