Schedule for trip to Copenhagen and London, June 2019

I am giving some talks in Copenhagen and London next month. Here is the schedule for those who might want to come along.

Vitalities Lab Newsletter Number 2

VITALITIES LAB NEWSLETTER

Number 2, 29 April 2019

The Vitalities Lab is led by SHARP Professor Deborah Lupton, Centre for Social Research in Health and Social Policy Research Centre, UNSW Sydney. Further details here.

New Publications

 

Presentations

 

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Deborah speaking at the CSRH seminar series

  • Deborah Lupton: ‘The internet both reassures and terrifies’: using the story completion method for health research. Presentation for the Centre for Social Research in Health Seminar Series, 2 April 2019
  • Deborah Lupton: ‘”Smart” health promotion: a perspective from digital sociology’. Invited presentation at a sub-plenary on smart health promotion, International Union for Health Promotion and Education World Conference, Rotorua, New Zealand, 10 April 2019
  • Deborah Lupton: ‘The more-than-human worlds of self-tracking for health and fitness’. Keynote at the World Congress of the Sociology of Sport, Dunedin, New Zealand, 24 April 2019
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The campus at the University of Dunedin, where Deborah gave a keynote

 

Upcoming events

  • 6 May: Deborah will be holding a  Vitalities Lab in-house pop-up methods workshop using the ‘New Metaphors’ inspiration cards
  • 7 May: Deborah is presenting a workshop on ‘Increasing your academic visibility’. Registration is free and open to all. Further details here.
  • 13 May: Deborah is the convenor and one of the panel speakers at the UNSW Grand Challenges Event ‘Shaping our digital future’. Registration is free and open to all. Further details here.

Opportunities

  • The Vitalities Lab has a doctoral research stipend worth $30,000 annually for four years for a domestic candidate who meets UNSW Sydney requirements for doctoral admission and wishes to pursue a project related to the Lab’s research directions. Contact Deborah Lupton (d.lupton@unsw.edu.au for further details).
  • Research practicums are also available for international doctoral students who are pursuing their studies at a university outside Australia to spend a period of time as a visiting researcher at the Vitalities Lab under Deborah Lupton’s supervision. Tuition fees apply. Further details are available here.

 

Re/imagining Personal Data Workshop: Call for participants

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AoIR Preconference Workshop: Re/imagining Personal Data

  • Tuesday 1 October 2019, University of New South Wales, Sydney, Australia
  • 9.30 am-12.30 pm (followed by catered lunch)

Organisers: Deborah Lupton (UNSW Sydney), Larissa Hjorth (RMIT) and Annette Markham (Aarhus University)

Overview: This half-day workshop involves a selection of hands-on arts- and design-based activities to invite participants to re/imagine personal digital data. Participants will be able to experiment with innovative methods of eliciting creative and more-than-representational responses to personal data and generating speculative imaginaries about the futures of data. These methods can be used for teaching purposes or research projects.

We will be using these activities to explore and respond to these key questions:

  • What do personal data do?
  • How best can we use them?
  • What is our relationship with our personal data?
  • Which data do we want to keep and protect and which do we want to discard or forget?
  • What are our affective and sensory engagements with these data?
  • What are the futures of personal data?

Participants at all levels of research experience are invited to attend, including postgraduate students and people working outside the university sector.

Registration and lunch are free, but places are strictly limited.

Please contact Deborah Lupton, Faculty of Arts & Social Sciences, UNSW Sydney (d.lupton@unsw.edu.au ) as soon as possible with an email noting that you’d like to register to secure your place.

Please note that this workshop follows the Data Futures conference, 30 September 2019, also to be held at UNSW Sydney (details here), and precedes the Association of Internet Researchers Conference taking place in Brisbane (details here).

Photo credit: “I Love Data” She Wept. Bixtentro, Flickr. CC BY 2.0

Vitalities Lab is go!

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It’s been a busy few weeks as I’ve moved to my new position as SHARP Professor in the Faculty of Arts & Social Sciences, University of New South Wales, Sydney. I am attached to both the Centre for Social Research in Health and the Social Policy Research Centre in the Faculty. But I’ve also established my own little research entity: the Vitalities Lab (click here for details).

I’ll be recruiting team members for the Lab very soon. I have a doctoral scholarship and postdoc positions to fill, and also have funds to support international visiting fellows.

The title of the Lab was chosen to encapsulate my hopes and plans for what we will do. ‘Vitalities’ points to engaging in lively social research methods, inspiring creativity, new directions, excitement and passion in research. It is also a nod to the new materialism theoretical perspectives with which the Lab will be engaging – particularly the vital materialism perspective espoused in the work of scholars such as Jane Bennett, Rosi Braidotti, Karen Barad and Donna Haraway. Vitalities further refers to the topics we’ll be exploring, which will be about human/nonhuman life itself: initially, people’s experiences with digital health technologies; living with data; and digital food cultures.

We will be running methods workshops, reading groups and other events.

Do get in contact if you’d like to learn more, make a visit to chat, start a postgraduate research degree with us, or otherwise collaborate in lively doings: d.lupton@unsw.edu.au

 

Image attribution: ‘Scattered light at Northern Spark’ by Tony Webster, Flickr, CC BY 2.0

My publications in 2018

Books

  • Lupton, D. (2018) Fat (revised 2nd edition). London: Routledge.

Book chapters

  • Lupton, D. (2018) Lively data, social fitness and biovalue: the intersections of health self-tracking and social media. In Burgess, J., Marwick, A. and Poell, T. (eds), The Sage Handbook of Social Media. London: Sage, pp. 562-578.
  • Lupton, D. (2018) Digital health and health care. In Scambler, G. (ed), Sociology as Applied to Health and Medicine, 2nd Houndmills: Palgrave, pp. 277-290.
  • Lupton, D. and Smith, GJD. (2018) ‘A much better person’: the agential capacities of self-tracking practices. In Ajana, B. (ed), Metric Culture: Ontologies of Self-Tracking Practices. London: Emerald Publishing, pp. 57-75.
  • Lupton, D. (2018) 3D printing technologies: a third wave perspective. In Michael Filimowicz, M. and Tzankova, V. (eds), New Directions in Third Wave HCI (Volume 1, Technologies). Springer: London, pp. 89-104.

Journal articles

Encyclopedia entry

Have large numbers of Australians left Facebook? It seems not

I am currently working on analysing interviews from my newest research project ‘Facebook and Trust’. This project was designed in response to the huge publicity given to the Facebook/Cambridge Analytica scandal in March this year. I was interested in investigating how Australian Facebook users were using the platform in the wake of the scandal and what their feelings were about how Facebook make use of the personal information that is uploaded.

Following the scandal, numerous news reports claimed that large numbers of Australians were deleting their Facebook accounts as part of the #DeleteFacebook trend. As one report contended,

Many Australians are for the first time discovering just how much Facebook knows about them and many are shocked, leading them to quit the platform.

A Pew survey of US adults conducted soon after Cambridge Analytica found that around a quarter of respondents had deleted the Facebook app from their phone in the past 12 months, and more than half had adjusted their privacy settings  The survey did not ask directly about why the respondents had taken these measures, and as the time-frame related to the past year there may have been other reasons that these respondents had taken these actions (for example, different controversies over ‘fake news’ or poor content moderation on Facebook that have also received high levels of news media publicity).

Indeed, it is interesting to compare these findings with a previous Pew survey undertaken at the end of 2012, in which over two-thirds of the respondents who were current Facebook users said that they had sometimes voluntarily taken a break from using the platform and one-fifth who said they were not current Facebook users had used the platform at one time but had stopped using it. Those who had taken an extended break or had stopped using Facebook referred to reasons such as not wanting to expend too much time on the platform or finding the content overly personal, trivial or boring. As this survey suggests, some Facebook users have long had ambivalent feelings about using the platform.

There are no reliable statistics that I can find on how many Australians have deleted their Facebook account post-Cambridge Analytica. According to the Social Media Statistics Australia website, which provides a monthly report on Australians’ use of social media, in September 2018 approximately 60% of Australians (across the total population, including children) were active Facebook users, and 50% of Australians were logging on once a day. A similar proportion of Australians were regular YouTube users: both platforms had 15 million active monthly users. Next in order of popularity were Instagram (9 million users per month), Snapchat (6.4 million), WhatsApp (6 million), Twitter (4.7 million), LinkedIn (4.5 million) and Tumblr (3.7 million).

In terms of age breakdown, the site reports that in September 2018, Australians aged 25 to 39 years were the largest group of Facebook users (6.1 million), followed by those aged 40 to 55 (4.1 million), 18 to 25 (3.5 million), 55 to 64 (1.6 million) and 65 years and over (1.2 million). Less than a million of Australians aged 13 to 17 years used Facebook,

I compared the report for February 2018 (the month before the Cambridge Analytica scandal was publicised) and May 2018 (soon after the scandal) with the figures for September 2018. The website reports that in both February and May 2018, there were 15 million monthly active Australian users, just as there were for September 2018. So if large numbers of Australians have deleted their accounts, this is not showing up in these data.

The interviews I am currently analysing should cast some light on how Australian Facebook users have responded (if at all) to the Cambridge Analytica scandal and other privacy-related issues concerning the personal information they upload to Facebook. I’ll provide an update on the findings once I finish working through the interviews.

Personal data metaphors and imagery

I am currently completing my new book, with the working title of Data Selves, to be published by Polity. Here is an excerpt from a chapter that looks at personal data materialisations.

We have to work hard to find figures of speech and ways of thinking to encapsulate the ontology of digital data. The concept of digital data, a first glance, appears to describe a wholly immaterial phenomenon that does not engage the senses: there seems to be nothing to look at, touch, hear, smell or taste. The metaphors and other figures of language employed to describe digital data are attempts to conceptualise and make sense of these novel forms of information and their ontologies. Even as digital technologies continue to generate and process detailed information about people’s bodies, social relationships, emotions, practices and preferences, prevailing discourses on these data tend to de-personalise and de-humanise them. The use of the term ‘data’ to describe these details signals a way of viewing and treating them, presenting these aspects as raw materials, ripe for processing and exploitation to make them give up their meaning (Räsänen and Nyce 2013; Gitelman and Jackson 2013). Once they have become defined and labelled as ‘data’, these details about people’s lives tend to be imagined as impersonal, scientific and neutral. They have been extracted from their embodied, sensory and affective contexts, rendered into digitised formats and viewed as material for research, management or commercial purposes.

The term ‘data’ is closely associated with ‘information’. Information as a term is subject to a wide range of (often debated) definitions in the academic literature. It usually involves the assumption that there are structures, correlations and patterns involved in the organisation and communication of meaning. Information tends to be imbued with the pragmatic meanings of rational thought-processes and material that can contribute to acquiring and using knowledge. It has use and value based on these attributes (Buckland 1991). Digital data, as forms of information that have been collected and processed using digital technologies, are often portrayed as more accurate and insightful than many other information sources (Lupton 2015; Kitchin 2014). Many references to big data represent it as anonymised massive collections of details that are valuable commodities, open to profitable exploitation. The World Economic Forum’s report (2011) describing big data as ‘the new oil’, ‘a valuable resource of the 21st century’ and a ‘new asset class’ is an influential example of this metaphor.

Metaphors of fluidities also tend to be employed when describing digital data. Digital data are popularly imagined to stream, flow and circulate in the ephemeral digital data economy, emitting imperceptibly from digital devices, flying through the air to lodge in and move between computing clouds as if comprised of vaporised water. Many metaphors of digital data use words and phrases that denote overwhelming power and mobilities, again often referring to large bodies of uncontrollable water; the data ‘deluge’, ‘flood’, ‘ocean’ and even ‘tsunami’ that constantly appear in popular accounts of big data in particular. These figures of speech are used to denote feelings of being overwhelmed by large, powerful masses of data (‘big data’) that appear to be difficult to control or make sense of in their volume. Still other metaphors represent data as ‘exhaust’, ‘trails’ or ‘breadcrumbs’, denoting the by-products of other interactions on digital networks. These metaphors suggest a tangible, perceivable form of digital data, albeit tiny, that require effort to discern and give up their value (Lupton 2015).

The terms ‘clean’ and ‘dirty’ have long been used in descriptions of data, however these data are generated. These terms refer to the degree to which the data can be used for analysis: clean data are ready for use, dirty data sets require further processing because they are incomplete, outdated, incorrect or obsolete. Portrayals of the affordances of digital data on the body/self, in their emphasis on objectivity and neutrality – or what might be described as their ‘cleanliness’ – denote a view of information about oneself that privileges such ‘clean’ data over what might be contrasted as the ‘dirty’ data that the body produces from sensual experience. Human cognition, memory, perception and sensation are ‘weak’ because they are ‘unscientific’. They are borne of fallible fleshly embodiment rather than the neutral, objective data that are generated by computer software and hardware.

Data have also been referred to as ‘raw’, suggesting that they are materials that are untouched by culture. It is assumed that by working on ‘raw’ data, data scientists transform these materials into useable commodities. Part of this transformation may involve ‘cleaning’ ‘dirty data’. Boellstofff (2013) uses the term ‘rotted data’ to describe the ways in which the materiality of data can degrade (for example, damaged hard drives that store data), but also how data can be transformed in unplanned or accidental ways that do not follow algorithmic prescriptions. Here again, these metaphors of ‘raw’, ‘cooked’ and ‘rotted’ draw attention the materiality of data and the processing, deterioration and recuperation that are part of human-data assemblages.

In her essay on digital data, Melissa Gregg (2015) employs a number of other metaphors that she devised to encapsulate the meanings of data. Data ‘agents’ suggests the capacities of data to work with algorithms to generate connections: matches, suggestions and relationships between social phenomena that otherwise would not be created. Gregg gives the examples of recommendation sites and online dating services, which connect strangers and their experiences with each other in ways that were previously unimaginable. She goes on to suggest that ‘In these instances, data acts [sic] rather more like our appendage, our publicist, even our shadow’ (Gregg 2015). Gregg also employs the metaphor of data ‘sweat’ (another liquid metaphor) in the attempt to emphasise the embodied nature of data, emerging or leaking from within the body to the outside in an uncontrolled manner to convey information about that body, including how hard it is working or how productive it is. Data ‘sweat’, therefore, can be viewed as a materialisation of labour. She then suggests the concept of data ‘trash’ (similar to the ‘exhaust’ metaphor mentioned above). Data ‘trash’ is data that is in some way useless or potentially polluting or hazardous: Gregg links this metaphor with the environmental effects generated by creating, storing and processing data in data centres. Both the metaphors of data ‘sweat’ and ‘trash’ suggest the materiality of digitised information as well as its ambivalent and dynamic status as it moves between ascriptions of high value and useless or even disgusting by-product.

An analysis of images used to represent big data in online editions of The New York Times and The Washington Post (Pentzold et al. 2018) found that they tended to fall into several categories in the attempt to visually represent big data: using large-scale numbers, interpretive abstract renditions, showing numbers or graphs on smartphone or computer screens, images of data warehouses and devices that generate data, robots, datafied individuals and meteorological imagery such as clouds. A dominant visual image involved photographic images of people working in the big data industry, such as data scientists, ‘nerds’ and ‘geeks’ (overwhelmingly male) and logos of internet companies. These images served as visual surrogates to represent the immateriality of big data. The researchers compared these images with those found on a general Google image search for ‘big data’ and also on Wikipedia and the image platforms Fotolia, Flickr and Pinterest. They noted that the images they found on these platforms were very homogeneous, featuring the colour blue, the words ‘big data’ written large, binary numbers, network structures and surveillant human eyes. These kinds of descriptions suggest that big datasets (including those drawn from people’s lives and experiences) are natural resources that are unproblematically open to exploration, mining and processing for profit. The personal details about people contained within these massive datasets are reimagined as commodities or research material. It is telling that the human elements of these images largely include men working in data analytics rather than the range of people who generate data or who may make use of their own data as part of their everyday lives.

In these types of portrayals, the status of personal data as human, or at least partly human entities is submerged in the excitement about how best to exploit these details as material commodities. Their liveliness is represented in ways that suggest their economic potential as nonhuman organic materials (streams, flows, oil, clouds, breadcrumbs). Yet conversely, another dominant discourse about personal data, which is particularly promulgated by the data profiling industry and civil society privacy advocates, is that these details are all-too-human or even excessively human: intensely intimate and revealing of people’s uniquely human characteristics. Proponents of the ‘Internet of Me’ make claims such as:

Now imagine tech working in your body at the biological level. Your body could express itself on its own, without you having to be in charge, to deliver more happiness, better health, whatever you truly need and want.

These sociotechnical imaginaries position devices and data as working together with human bodies in ways that devolve agency to the device. ‘You’ no longer have to be ‘in charge’ – instead, the device takes over. Other imaginaries around the Internet of Me configure the idea of personal cloud computing, in which all people’s personal data go to a centralised cloud computing repository where they will be able to access all their data.

When I performed my own Google image search using the term ‘personal data’, the images that were returned by the search again featured the colour blue, male figures and binary numbers. Notably, several images showed a pen and a paper form with the words ‘personal information’ at the top, perhaps as an attempt to respond to the immateriality of digitised information by rendering it in analogue forms with which many people would be familiar. Images using locks and keys as metaphors were also dominant, suggesting the value of personal data but also how closed they are to people who may want to make use of them. When I used the search term ‘personal data privacy’, new images were introduced in addition to those appearing under ‘personal data’. These included images of spy-like or Big Brother surveillance figures and also images showing human hands protectively attempting to cover computer keyboards or screens, as if to elude the gaze of these spying figures as people used their devices.

One online article on the Internet of Me features an image in which a human body is comprised of many different social media and other internet platform icons as well as coloured dots representing other data sources. Instead of an assemblage of flesh-bone-blood, the body is completely datafied and networked. The interesting thing is that this body is represented as an autonomous agent. The networks that generate data and keep the body vibrant and functioning are internal, not externalised to networks outside this socially alienated body. Data flows are contained within elements of the body rather than leaking outside it to other bodies. This suggests an imaginary in which the Internet of Me is neatly contained within the envelope of the body/self and thus able to control ingress and egress. This is an orderly closed system, one that confounds both utopian and dystopian imaginaries concerning the possibilities and risks of one’s body/self being sited as just one node in vast and complex networked digital system.

In contrast, a series of 2018 British advertisements for the BBH London & Experian data analytics company used the ‘data self’ concept in an attempt to humanise data profiling and emphasise the similarities of these profiles to the people from whom they are generated. Six versions of this ad featured photographs of comedian Marcus Brigstoke and his ‘data self’, a person who looked exactly like him. As one of the ads, headlined ‘Meet your Data Self’ claimed: ‘Your Data Self is the version of you that companies see when you apply for things like credit cards, loans and mortgages. You two should get acquainted’. One of the ads, headlined, ‘What shape is your Data Self in?’, showed the comedian looking at his doppelganger lifting a heavy barbell. The copy read ‘If your Data Self looks good to lenders, you’re more likely to be approved for credit. That’s a weight off. Get to know your Data Self at Experian.com.uk.’ Another ad asked ‘Is your Data Self making the right impression?’, depicting the comedian, dressed in casual clothes, shaking hands with his more formally dressed (in suit and tie) data self.  Notably, this person and his ‘data self’ was a white, youngish man, excluding representatives from other social groups.

The ontological status of personal data, therefore, constantly shifts in popular representations between human and nonhuman, valuable commodity and waste matter, nature and culture, productive and dangerous. In both modes of representation, the vibrancies of digital data – their ceaseless production, movements, leakages – are considered to be both exciting and full of potential but also as dangerous and risky. Personal data assemblages are difficult to control or exploit by virtue of their liveliness.

References

Boellstorff, T. (2013). Making big data, in theory. First Monday, 18(10).

Buckland, M. K. (1991). Information as thing. Journal of the American Society for Information Science, 42(5), 351.

Gitelman, L., & Jackson, V. (2013). Introduction. In L. Gitelman (Ed.), Raw Data is an Oxymoron (pp. 1-14). Cambridge, MA: MIT Press.

Gregg, M. (2015). The gift that is not given. In T. Boellstorff, & B. Maurer (Eds.), Data, Now Bigger and Better! (pp. 47-66). Chicago: Prickly Paradigm.

Kitchin, R. (2014). The Data Revolution: Big Data, Open Data, Data Infrastructures and Their Consequences. London: Sage.

Lupton, D. (2015). Digital Sociology. London: Routledge.

Pentzold, C., Brantner, C., & Fölsche, L. (2018). Imagining big data: Illustrations of “big data” in US news articles, 2010–2016. New Media & Society, online first.

Räsänen, M., & Nyce, J. M. (2013). The raw is cooked: data in intelligence practice. Science, Technology & Human Values, 38(5), 655-677.

World Economic Forum (2011). Personal Data: The Emergence of a New Asset Class. World Economic Forum.

 

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.

 

 

 

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.