Excerpt from Introduction of Data Selves

My new book Data Selves: More-than-Human Perspectives is due for publication next month. Below is an edited excerpt from the Introduction chapter, in which I explain my theoretical approach.

The phenomenon of personal digital data poses a challenge at an ontological level. Personal data blur and challenge many of the binary oppositions and cultural boundaries that dominate in contemporary western societies. Personal data are both private and public. They could be considered to be owned by, and part of, the people who have generated them, but these details are also accessed and used by a multitude of other actors and agencies. At a deeper level, personal data challenge the ontological boundaries between the binary oppositions of Self/Other, nature/culture, human/nonhuman, and living/dead. Discussions of how digital data about and for people are incorporated into everyday lives must therefore grapple with the problem of how we conceptualise the idea of ‘the human’ and life’ in relation to the digital data that are generated by and for humans. Because digital data are associated with non-human entities such as digital devices and software, and because they are often viewed as non-material entities, they are often de-humanised and de-materialised in discourses. The oft-used term ‘big data’, for example, tends to portray large digital datasets as de-personalised and anonymous, even though these datasets are often comprised of very intimate and sensitive details about people and their lives. Alternatively, explanations of how people collect and make sense of their own data are often reduced to individualised models of cognition or behavioural psychology, removing the sociocultural, sensory and affective dimensions of how people generate and respond to these details about themselves …

In what follows, I examine the interplay of human and nonhuman affordances associated with digital technologies – devices, software and the digital data they generate – and the agential capacities that are opened up or closed off as these things assemble. I ponder the questions of who benefits from these agential capacities, and in whose interests they operate. Here again, affective forces are central to the engagements of humans with these nonhuman things and the capacities that are generated by their gatherings. I address how human-data assemblages can generate agential capacities that empower and vitalise actors in the assemblage; but can also expose them to vulnerabilities and harms.

This approach recognises the entanglements of personal digital data assemblages with human action, reaction and understanding of the world. Personal digital data assemblages are partly comprised of information about human action, but their materialisations are also the products of human action, and these materialisations can influence future human action. While digital data assemblages are often conceptualised as immaterial, invisible and intangible, I contend that they are things that are generated in and through material devices (smartphones, computers, sensors), stored in material archives (data repositories), materialised in a range of formats that invite human sensory responses and have material effects on human bodies (documenting and having recursive effects on human flesh). The primary analytical focus is understanding what personal data assemblages allow bodies to do, and how they come to matter in people’s lives.

Feminist new materialism also calls into question and problematises how we might define and materialise personal data. While the literatures on datafication and dataveillance tend to assume that personal data are digital artefacts that are primarily materialised in two-dimensional visual formats as the outcomes of humans’ encounters with digital technologies, an emergent body of scholarship in what has been termed ‘posthuman’ or ‘post-qualitative’ inquiry (Lather and St. Pierre 2013; MacLure 2013) contends that data about humans can be any kind of matter, both organic and inorganic. Human flesh, bones, tissue, blood, breath, sweat or tears, human sensory and affective responses and reactions, objects that people use as part of their mundane routines, or artworks and creative writing outputs, for example, are among the materialisations of and participants in human experience that can be viewed and treated analytically as ‘data’ (Koro-Ljungberg et al. 2017; Taylor et al. 2018).

Drawing on this perspective, I argue that examining the multitude of media (loosely defined) that are used to represent personal data, including arts-based and three-dimensional approaches, is one way of working towards a different way of thinking about their onto-ethico-epistemological aspects. Expanding the definition of what materials can be treated as personal data works to highlight the performative, embodied, multisensory, affective and agential dimensions of human-data assemblages. Not only does this perspective acknowledge the more-than-human worlds of personal data, it also highlights the more-than-digital dimensions of these assemblages.

In this book, I take up calls by Barad (in Dolphijn and Van der Tuin 2012) and Braidotti (2018) for a critical posthuman studies that incorporates an affirmative ethics. For Braidotti (2018), the mutable and distributed nature of human agency offers a politics that is able to challenge current fears and preoccupations. Cartographies of power relations and their associated entitlements, agencies and capacities can provide detailed ways of thinking through and with political practices and subjectivities. They help to think differently about figurations of human action, belief and practice, their implications, boundaries and limitations, and how new modes of being and acting can be configured and political change effected.

Central to my argument is that in the face of the continuing de-personalisation and de-humanisation of details about people’s bodies and lives that have been rendered into digital data, a new onto-ethico-epistemological position should be developed that reinvests human-data assemblages with different meanings and reconceptualises what we mean by ‘personal data’ – and indeed, how we think about and treat our ‘data selves’. In so doing, we can begin to think more seriously and deeply about what is at stake when human-data assemblages are de-personalised and de-humanised. If these new ways of thinking are taken up, they have significant that go to the core of selfhood, social relations and embodiment as they are enacted in more-than-human worlds.

In making my argument in the pages of this book, I seek to engage in what Barad (2007) refers to as ‘diffractive methodology’, which attempts to work with different bodies of research and theory to generate new insights. As she notes, it is the diffractive patterns of resonances and dissonances that make entanglements of matter and meaning visible. For Barad, diffractive thinking goes beyond critique to ethical engagements, involving reading insights through one another: ‘Diffractive readings bring inventive provocations; they are good to think with’ (Barad in Dolphijn and Van der Tuin 2012: 50). In the spirit of a diffractive approach, this book’s content is intentionally interdisciplinary and eclectic. While I work principally with feminist new materialism theory, relevant perspectives offered from scholarship in the anthropology of material culture, digital sociology, media studies, internet studies, cultural studies, information studies, archival studies, human-computer interaction studies, education, archaeology and cultural geography are also included.

Chapter 2 provides an overview of these perspectives and begins to explore how they might be taken up to theorise the more-than-human worlds of human-data assemblages. In Chapter 3, I address the ways in which personal data as a phenomenon is materialised in words, images and three-dimensional representations, including provocations and interventions from design- and arts-based approaches that offer alternative ways of thinking about personal data. In Chapters 4 and 5, I draw on empirical material from several research projects I have conducted since 2015 to provide insights into how people conceptualise and live their personal data (details of these projects are provided in the Appendix.) Chapter 4 discusses how people enact and make sense of their personal data and identifies the relational connections, affective forces and agential capacities generated by doing data. Chapter 5 reviews the ways in which the tension between the sharing ethos of participatory digital media and the dystopian imaginaries that circulate concerning the ‘internet knowing too much’ about people are dealt with in everyday data concepts and practices. In the Final Thoughts section, I present my vision for how a new ethics of caring about and living with our data selves might be developed.

 

In-conversation about digital health and Data Selves

In June 2019, I took part in an ‘in conversation’ event at King’s College London, organised by the Social Science & Urban Public Health Institute. The conversation was transcribed and published on the Institute’s website. They have kindly given permission for me to repost the content here. Thank you to Benjamin Henckel and Shayda Kashef for their work on this event and the post.

On 13th June 2019 the Social Science & Urban Public Health Institute (SUPHI) at King’s College London hosted a special in-conversation event with Professor Deborah Lupton. During the event Professor Lupton discussed her forthcoming book Data Selves, and reflected on the role that digital technologies are playing in the urban public health landscape.

Below is an edited version of the transcript from the event. Special thanks to sponsor, PLuS Alliance.

By Benjamin Hanckel and Shayda Kashef

What is digital health and where do you see the field at now?

Digital health is  a  short, snappy title to refer to the huge range of digital technologies that are used to apply to health, right through from older technologies such as websites, search engines, online discussion forums, through to things like 3D printing of body parts and apps and all those kinds of digital technologies that are quite new on the scene. So I think digital health for me encompasses that diverse range of ways that certain forms of healthcare and health communication can be digitised. And given that there are more and more of these technologies emerging, there’s never something I have to wonder writing about because there’s always something new on the horizon and it’s really interesting to  trace their trajectory and find how older technologies are often forgotten about. Google search is probably the number one most highly used digital health technology because people use it as a form of self-triage, and it’s interesting to me how those older technologies are often forgotten about in the rush and the excitement of the social imaginaries that represent newer technologies, such as apps and wearable devices, which is the brave new world of healthcare. People are often still getting much more value from websites and online discussion forums, for example, than they are getting from health apps.

Putting this in the context of your current work, can you tell us about the Vitalities Lab you set up at the University of New South Wales and how it relates to digital health?

I’ve been building on my previous interest in Foucauldian theory now to incorporate some perspectives from new materialisms and particularly feminist new materialisms and vital materialisms, as there’s an overlap between those two materialisms but they aren’t the same thing. I’ve only been at the University of New South Wales for four months but as part of my appointment I was encouraged to set up a research team. The name Vitalities is meant to denote the kinds of directions and interests that I have at the moment. So to begin with I’ve been writing a lot about ‘lively data’ over the past few years and that means people’s personal data and about the digital data economy and how digital data about people take on value. They are lively because people engage with data about their bodies and themselves in ways that synergistically change their own lives, they may respond to their own data and change aspects of their lives based on what their data are telling them. So that’s the notion of lively data.

Vital materialism gets back to that idea of vitalities as well. So, some of the feminist new materialism scholarship that I’ve been engaging with, particularly the work of  Karen Barad, Jane Bennett, Donna Haraway and Rosi Braidotti, talk a lot about capacities and affective forces, and how they are generated through interactions that people have with other humans and with non-human actors. It’s very much this idea that there are capacities that are generated when people come together with other people, with non-humans, which I’m trying to explore in my recent research, of course within particular digital technologies, how people engage with their digital devices but also their data to generate new capacities. So that gets back to that vitality as well, there are these capacities constantly being generated and reformed and reconfigured with and through devices and data.

Can you expand on how ‘vitalities’ might contribute to new ways of thinking about methods and methodological enquiry?

In terms of theoretical methods, there’s a sort of emerging approach to qualitative empirical research, post-qualitative inquiry, that I’ve also found really interesting to work with lately. And there’s a very strong overlap of post-qualitative inquiry with more than human theory, because post-qualitative inquiry sees research as always being a research assemblage, as always being partially emergent and sort of going away from the very positivist approach to qualitative approaches which have dominated a lot of health related qualitative enquiry of late. Every type of research is always a research assemblage: the researcher is always part of the data that they generate. So that’s where post-qualitative research departs from the more positivist approach to qualitative research. It’s interesting how the more than human theory is now being brought into research methods: and that’s what I’m trying to do with the kind of work that I’m doing recently, when I’m writing up my own empirical research and analysing it to bring in post-qualitative perspectives as well as the more than human theory that I’m trying to think with when I’m generating concepts that I’m using to analyse my empirical data. So the empirical data might include traditional forms of data such as interview transcripts, or focus group transcripts, but with post-qualitative methods they often now include arts-based materials, drawings, storyboards that people might have made in workshops. I’ve been experimenting with a method called story completion recently, which involves people finishing stories that we start for them and then inviting them to create the narrative, which is another form of research material that I think can be quite interesting to use as a way of understanding people’s experiences. So that’s been a really new method that I’ve been experimenting with as another way of accessing people’s feelings and experiences in ways that they themselves might find hard to articulate if we’re just asking them in an interview to articulate. Because often they’re such mundane experiences for people that coming at it from a more oblique way or a more sort of creative way can be an interesting way to access those kinds of experiences and fears.

Can you expand on how you have engaged with some of these themes in your most recent work, and in particular in your forthcoming book Data Selves

Data Selves covers what I call ‘living data’ and it gets back to the lively data I was talking about earlier, but also how people live with and through and alongside their personal data. In Data SelvesI’m really trying to expand on feminist new materialism, human data assemblages ideas, and I argue that people’s personal data are often represented in dematerialised and depersonalised ways, such as when we talk about the big data phenomenon, the data tsunami and being overwhelmed by data. And we often forget that not all data that are generated by, for example smart cities or by any other form of data generation, are about non-humans. But a lot of those data are about actual humans, about their lives, about their bodily practices and habits and routines.

With Data Selves, as the title suggests, I wanted to bring in that more than human, non-human aspect and to understand data human assemblages as all human assemblages, and bring in that humanity and re-humanise this core data. And for me that raises a different form of ethics around those data. I’m arguing that we should think of personal data in similar ways, as sort of embodied, human, not fleshy but they’re kind of about our flesh, that sort of ambiguous ontology. So I would argue that we need to think of them in certain ways like we think of other body parts and other body attributes that people donate or give or sell in some situations as very much human remains, and I’m arguing that that’s how we should treat people’s personal data, and that raises questions about the ethics of how other people might use those data and seek to profit from those data.

In the book I draw on a few of my empirical research projects, which do talk about people, about how they engage with and make sense of their data, and I’m arguing that we need to understand people’s engagements with their data as very often infused with affect, vulnerabilities, multi-sensory engagement. So there’s actually a chapter on what I call materialisations of data, when I talk about social imaginaries of data, the very utopian ideas of data as being very productive and generative, and how people themselves can benefit from their own data. So there’s that very positive representation. Then what’s interesting that over the past few years though, when talking about people’s personal data there’s this very dystopian representation of data that privacy no longer exists. So you’ve got really interesting polar representations of how people’s data can be used in both positive and negative ways.

I did a project which I called the Data Personas Project and that built on the design methods approach, personas. I called it their data persona, or a profile of you that’s made about details about you from your online and app related encounters and engagements. And then I asked people to imagine the futures of their data persona, because I think there’s a lot of interesting and intriguing ways we can think about inviting people to imagine futures, rather than having futures imagined for them, on behalf of them by others. I also asked them how similar or different is your data persona from you? Some people did imagine a dystopian idea whereby nothing is private, you know, the internet knows everything about me, but most people said the internet doesn’t know everything about me, it doesn’t know my internal beliefs and feelings, and so on. So I thought that was really interesting because we also get this discourse in media studies in particular and surveillance studies which is very critical of the idea that people think privacy is dead and they’re not concerned about their privacy, you know, the privacy paradox, so yes, people say “I’m worried about my privacy” but they don’t do anything to actually protect their privacy. But that research that I did using the data persona concept kind of shows that people don’t think that their privacy has been completely taken over by the internet.

There is an ongoing debate about data capture for the common good, versus data capture that is perceived as morally questionable. How might we think about these boundaries?

I try to avoid a really normative approach to these kinds of ethical discussions. The context is everything. And people’s contexts are so variable and unique to them, that’s what really comes out when you look at the ways that people engage with digital technologies and digital data. If you look at the Association of Internet Researchers document on ethics around doing research with online materials, it’s really interesting because they argue that you have to look at the context for each research project. There shouldn’t be hard and fast guidelines about how social research is used when we’re talking about using people’s personal data. More recently, human ethics committees have become far more aware of that, as people might be putting their information out there when they go online, so it’s become a more complicated situation now. It’s not as easy to get ethics approval and you do actually have to argue for why and how you’ll get those people’s consent or if you don’t, why not and so on, so it’s become far more complicated. All I would say is that there needs to be these very detailed, lengthy considerations about the context.

But all those issues around whether people know that you’re accessing their data, to what extent, now there’s the issue now with de-anonymisation too, Because if you know what you’re doing, data harvesters can be really good at de-anonymising data to generate detailed profiles about people.

But even when a decision is made about if it is appropriate to generate these data and what to use people’s data for, because it might improve public health or improve treatment for medical conditions, really strong data privacies and security measures can be leaked or breached or hacked. So you don’t know what the future of those lively data might be, so that’s very difficult.

The event concluded with a brief Q&A session with the audience which covered a range of issues, including:

  • An expansion of the debate about data collection, and how we manage data capture within the context of emerging technologies, and
  • A discussion about the possibilities for technologies to benefit certain people who are marginalised, such as people with disabilities, with Professor Lupton acknowledging that there is more to do in this area.

Vitalities Lab Newsletter Number 4

 

VITALITIES LAB NEWSLETTER

Number 4, 2 August 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 Lab members

In July, the Vitalities Lab welcomed two new postdoctoral fellows: Dr Ashleigh Watson (left) and Dr Clare Southerton.

IMG_1237

Ashleigh will be working on a new ARC Discovery Project ‘Living with Personal Data: Australians’ Understandings and Practices’ with Deborah and Mike Michael, University of Exeter. This project now has its own website, which can be found here. It will be regularly updated with news about the project findings, the methods we are experimenting with and lists of readings we are engaging with.

New publications

  • Lupton, D. (2019) Australian women’s use of health and fitness apps and wearable devices: a feminist new materialism analysis. Feminist Media Studies, online first. doi:10.1080/14680777.2019.1637916
  • Fitzpatrick, K., Leahy, D., Webber, M., Gilbert, J., Lupton, D. and Aggleton, P. (2019) Critical health education studies: reflections on a new conference and this themed symposium. Health Education Journal, online first. org/10.1177/0017896919860882

New grant

Deborah is one of an international team of researchers who has been awarded a network support grant by the Swedish  Foundation for the Humanities and Social Sciences, led by Martin Berg at Malmo University, Sweden. The network will convene activities related to the topic of ‘Re-humanising automated decision making’. Further details are here.

Presentations/workshops

Ashleigh ran a creative methods workshop on Affect, Knowledge and Embodiment at Griffith University, Brisbane, 19 July.  Details of the workshop and the zine created there can be viewed and downloaded here.

Ashleigh will be leading another zine making workshop at the Vitalities Lab on the topic of algorithmic identities in September. She will also be contributing to a TASA workshop on Creativity and Methodological Innovation in the Sociology of Familial and Intimate Relationships to be held 29 November: details are here.

Media appearances

Deborah was quoted in article in Bustle magazine on digital technology designed for women: https://www.bustle.com/p/is-the-rise-of-femtech-a-good-thing-for-women-heres-what-the-experts-think-17993009

Deborah did an interview for ABC Radio Gold Coast about her research on health and fitness apps and wearable devices (9 July)

Upcoming events

Deborah is an invited speaker at the TASA Health Day event on Data, Technology and Sociology in the Age of Digital Health: details are here

Kicking off the project

I’ve set up a new website for my project ‘Living with Personal Data’. I’ve reblogged this first post from this project here. The project can be followed by going to the Home page and scrolling down to provide your email to subscribe.

LIVING WITH PERSONAL DATA

The Living with Personal Data project has just kicked off. We have appointed a Postdoctoral Fellow, Dr Ashleigh Watson, to begin working on the project. While we are waiting for our ethics approval, Ashleigh is updating our literature review. In conjunction with the Vitalities Lab led by Deborah Lupton, we are running several pop-up methods workshops in the next few months to experiment with the innovative methods we will be using in our fieldwork, which will include home visits with people living in Sydney, and hands-on workshops with diverse groups of Australians.

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Interview with me about my new book Data Selves

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I did an interview recently with Rafael Grohmann about my new book Data Selves: More-than-Human Perspectives (out from Polity in October). He has now translated it into Portuguese and published it on his blog DigiLabour: available here.

Below are the original English questions and my written responses.

RG: What does data selves mean in a more-than-human perspective?

DL: A more-than-human perspective acknowledges that humans are always already part of nonhuman relations. Humans and nonhumans come together in assemblages that are constantly changing as humans move through their worlds. From this perspective, digital devices and software assemble with humans, and personal data are generated in and with these enactments. These data assemblages are more-than-human things. People live with and co-evolve with their personal data – they learn from data and data learn from them in a continually changing relationship.

RG: How can feminist materialism theory and the anthropology of material culture help us understand datafication?

DL: In previous work, I have suggested the digital devices can be considered to lively, as can digital data. Building on this approach, I use feminist new materialism and the anthropology of material culture to investigate these dimensions of datafication and dataveillance further. The feminist new materialism scholars I draw on in the Data Selves book are Donna Haraway, Rosi Braidotti, Jane Bennett and Karen Barad. These scholars share an interest in the affective forces, vitality and distributed nature of agencies as they are generated with and through more-than-human assemblages. Scholars in the anthropology of material culture such as Tim Ingold and Elizabeth Hallam have also called attention to the lively agencies of humans and nonhumans when they gather together. They focus on how humans respond to, learn about and make sense of their worlds when engaging in embodied and sensory encounters with nonhumans. Ingold describes this as ‘being alive to the world’.

In developing my theoretical approach in Data Selves, I found these perspectives helpful in thinking through what Barad calls the ‘onto-ethico-epistemological’ dimensions of datafication and dataveillance. These perspectives have not yet been taken up to any great extent in thinking about datafication and dataveillance. This is the project I am pursuing. It allows for a non-normative ethical approach to datafication and dataveillance that acknowledges the constantly emergent and dynamic nature of lively data selves and the embodied, multisensory and affective dimensions of how humans live with and learn from their data.

RG: In your forthcoming book, do you talk about data selves and quantified self in world of work?

DL: I don’t discuss the workplace to any great extent in Data Selves. In in my previous book The Quantified Self there was quite a bit of discussion of self-tracking in the workplace. Data Selves differs from The Quantified Self in including a lot of discussion of my empirical research projects that I have conducted over the past few years – indeed, since writing The Quantified Self – which involves people discussing their self-tracking practices and their understandings and use of personal data. My research participants didn’t talk much about their data practices in the context of the workplace, apart from some references on the part of some people to using productivity tools. Those who were active self-trackers were predominantly tracking their body weight, fitness, food or calorie intake, sleep and finances.

RG: In the last year, many books on the same subject have been published, such as David Beer, Shoshana Zuboff, Taina Bucher, Tarleton Gillespie, José van Dijck and Thomas Poell. What is the difference of your book, in theoretical and conceptual terms?

DL: My book differs in several ways: 1) in using more-than-human theory to analyse datafication and dataveillance; 2) in discussing findings from my own empirical research into self-tracking and people’s understandings and practices related to their personal data; and 3) including a greater focus on the multisensory dimensions of data materialisations and sense-making, including how artists and critical designers have sought represent personal data or critique datafication and dataveillance in novel ways.

RG: After a few years since your book Digital Sociology, for you, what is the future research agenda of digital sociology?

DL: I have become increasingly interested in more-than-human theory since writing Digital Sociology and also in postqualitative research as well as innovative methods for social inquiry, including experimenting with design- and arts-based methods. Taking these perspectives and methods into new directions for me constitutes the future agenda of digital sociology.

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

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.

 

What do Australian women think of My Health Record?

The Australian government has met with difficulties in persuading Australians to register with its national electronic health record system, My Health Record. Just one in five Australians have a My Health Record. I have just submitted an article for peer review that reports on the findings from the Australian Women and Digital Health Project in which the participants talked about their attitudes to and experiences with My Health Record in interviews and focus groups. As the Australian Digital Health Agency moves towards an opt-out process to register as many Australians as possible, the findings from this study offer important insights into what Australian women think of My Health Record.

The full preprint version of the article can be accessed here: Article – My Health Record preprint.

Here are the major findings:

  • Despite their generally highly engaged use of online health and medical sources, awareness and use of My Health Record was quite low among the participants. When asked if they had signed up to My Health Record, only a third (24 out of the 66 participants) answered that they definitely had enrolled themselves. Nine women said they weren’t sure or couldn’t remember if they had registered, while the remaining 33 women responded either that they had not heard of My Health Record or they had decided not to sign up.
  • The women who had registered for My Health Record said that they had done so because of the benefits they could see of being able to have a digital health record that could be shared across providers. None of the women who had registered for My Health Record made any reference to the opportunity to be able to view their health records themselves or add to them. As this suggests, there was little awareness among the participants that My Health Record had been initially designed as a patient engagement tool as well as a platform for storing their medical information and sharing it with their healthcare professionals.
  • Technical difficulties were major barriers to enrolling and using the system successfully. The problem was not just My Health Record itself, but the MyGov platform on which it was hosted. Several women made reference to other services on MyGov being difficult to access and use.
  • No participants had yet found any benefit or use for My Health Record. It was viewed more as a repository for the use of healthcare professionals than for women’s own active use as contributors and users of their data.
  • Several participants said that they regularly had to remind their doctors that they had a My Health Record, only to find that the doctors were not using the system or uploading information, and even discouraging patients from using it.
  • Recent publicity in relation to the Australian government’s misuse or lack of protection of citizens’ personal data have led to the participants demonstrating low levels of faith in the government’s capability to adequately manage My Health Record. Many participants also referred to their distrust in the Australian government to protect their medical information adequately. Government agencies were represented as incompetent rather than malicious, lacking the knowledge and skills to establish and maintain a national EHR system that was secure and effective enough to give them enough confidence or motivation to register and use it.
  • In summary, these findings suggest that the Australian government needs to provide adequate and appropriate information to the Australian public about My Health Record, and particularly the opt-out process and negotiating consent to data sharing. It so doing, it will have to address wider problems of the Australian public’s lack of trust in the ways in which government agencies collect, share, protect or exploit their personal data.

 

 

Using feminist materialism to analyse app use

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

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

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

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.