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.

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)

 

 

Digital health promotion: possibilities and limitations

 

Pinterest health

Health and fitness content on Pinterest

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Self-tracking Cyclists Project

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

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

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

Australian Self-Trackers Project

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

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

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

Australian Women and Digital Health Project

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

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

Analysis from this project is in progress.

Findings from across the projects

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

Frankenstein, Black Mirror, and personal data

Frankenstein

 

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

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

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

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

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

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

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

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

Critical art and design projects about digital data

 

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

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

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

Autonomous Tech Fetish

Max Dovey

Dear Data

Lucy Kimbell

Thecla Schiphorst

Institute of Human Obsolescence

Tom O’Dea

Erica Scouti

Critical Interface Politics Research Group

Tega Brain

Pip Thornton

Data Materialities

Melanie Gilligan

Mitchell Whitelaw

David Benque

Zach Blas

James Bridle

Laurie Frick

Ted Hunt

Poetry in Data

Data Cuisine

The Center for Genomic Gastronomy

Grow Your Own: Life After Nature (exhibition)

panGenerator

Benjamin Grosser

Superflux

LingQL

Ellie Harrison

Heather Dewy-Hagborg

Julian Oliver

Gordan Savicic

Jennifer Lyn Morone

Brian House

Auger Loizeau

 

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

My 2017 publications

Books

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

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

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

Special journal issues edited

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

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

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

Book chapters

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

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

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

Lupton, D. (2017) Personal data practices in the age of lively data. In Daniels, J., Gregory, K. and McMillan Cottom, T. (eds), Digital Sociologies. London: Policy Press, 335—350. (PDF Lupton 2017 personal data practices in the age of lively data chapter)

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

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

Journal articles

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Editorials

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

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

Talks in Europe, November 2017

I am visiting Europe to give several talks in early November. Details are as follows:

Wednesday 1 November: Keynote presentation at the ‘Emotion and Affect in Dataified Worlds’ workshop, Helsinki, Finland.

Friday 3 November: Opening presentation with our Wellcome Trust grant research team at the ‘Researching Young People and Digital Health Technologies’ symposium we have organised, Manchester, UK (details here).

Monday 6 November:  Invited public lecture at the ‘Digital Health’ workshop, Malmo, Sweden.

Tuesday 7 November: Invited presentation at the ‘Challenges of Digital Health’ workshop, Orebro, Sweden.

Friday 10 November: Keynote at the ‘Monitoring the Self: Negotiating Technologies of Health, Identity and Governance’ conference, Helsinki, Finland (details here).