Vitalities Lab Newsletter Number 6

VITALITIES LAB NEWSLETTER

Number 6, 6 November 2019

The Vitalities Lab is led by SHARP Professor Deborah Lupton, Centre for Social Research in Health and Social Policy Research Centre, UNSW Sydney. Team members are Dr Ashleigh Watson, Dr Clare Southerton and Dr Marianne Clark. Further details here.

 

New team member

The VLab welcomes a new team member: postdoctoral fellow Dr Marianne Clark (pictured below), who received her doctorate in human movement and social theory from the University of Alberta.

University of Waikato Portrait

 

New Australian Research Council Centre of Excellence Research Grant

The ARC Centre of Excellence in Automated Decision-Making and Society, led by RMIT University, was announced in October. Deborah is one of the 18 Chief Investigators across this eight university centre. She will be leading the UNSW Node of the Centre, as well as the Health Focus Area, and will be a co-leader of the People Program. The Centre is funded from 2020 to 2026. More details are here.

New book

Deborah’s new book Data Selves: More-than-Human Perspectives was published in October. Further details of the book, including excerpts, can be found here.

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Other new publications

Southerton, C., Damkjaer, M.S. and A. Albrechtslund (2019) Photo sharing as participatory surveillance. In Cultures of Participation: Arts, Digital Media and Cultural Institutions, Routledge.

Lupton, D. (2019) Toward a more-than-human approach to neurotechnologies. American Journal of Bioethics Neuroscience, 10(4), 174-176.

Presentations/workshops

On 1 October the VLab hosted the ‘Re-imagining Personal Data’ workshop as a satellite event of the Association of Internet Researchers Conference, which was held later that week at QUT in Brisbane. Deborah convened the workshop with Annette Markham from Aarhus University and Larissa Hjorth from RMIT University. (Photo below shows a participant with one of the activities completed in the workshop.)

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Clare was involved in two presentations at the Association of Internet Researchers Conference:

  • Damkjaer, M. S., Southerton, C., and Albrechtslund A. ‘Relief from communication: Parental surveillance technologies, trust and care’ (photo from the presentation below).
  • McCann, H. and Southerton, C. ‘Fangirls and fake news’.

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Other activities

In October, Deborah travelled to Berlin for the first meeting of the The Lancet and Financial Times ‘Governing Health Futures 2030: Growing Up in a Digital World’ Commission. She and other commissioners, from peak international organisations such as the Red Cross, the World Health Organization, the OECD, the UN and UNICEF, are working on a report that is due for completion in 2021. The German Health Minister came to the meeting to discuss his country’s digital health initiatives – the photo below shows Deborah with the other commissioners and the Minister (in the middle).

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Media appearances

  • The photo sharing chapter co-authored by Clare was cited in a New York Times article about parents sharing photos of their children online.
  • Deborah was quoted in a Sydney Morning Herald article about mothers’ use of smartphones and social media.

VLab visitors

We welcome Dr Jens Lindberg, Umea University, Sweden, visiting the VLab from 1 October 2019 to 31 August 2020 and doctoral student Mr Jordan Mackenzie, University of Stirling, Scotland, visiting from 5 November to 16 December 2019

Vitalities Lab Newsletter Number 5

VITALITIES LAB NEWSLETTER

Number 5, 11 September 2019

The Vitalities Lab is led by SHARP Professor Deborah Lupton, Centre for Social Research in Health and Social Policy Research Centre, UNSW Sydney. Team members are Dr Ashleigh Watson and Dr Clare Southerton. Further details here.

New publications

  • Maslen, S. and Lupton, D. (2019) ‘Keeping it real’: women’s enactments of lay health knowledges and expertise on Facebook. Sociology of Health & Illness, online first. doi: 10.1111/1467-9566.12982
  • Lupton, D. (2019) ‘The internet both reassures and terrifies’: exploring the more-than-human worlds of health information using the story completion method. Medical Humanities, online first. org/10.1136/medhum-2019-011700

Presentations/workshops

19 July: Ashleigh convened ‘Affect, Knowledge and Embodiment: A Critical Feminist Arts/Research Workshop’ at the Griffith Centre for Social and Cultural Research, Griffith University, Brisbane, with Dr Laura Rodriguez Castro (Griffith) and Sam Trayhurn (WSU).  Information about the workshop and copies of the zine can be found here.

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14 August: Deborah gave an invited seminar presentation on her digital health research for the School of Public Health & Community Medicine, UNSW Sydney.

14 August: Deborah gave an invited lecture and a workshop, both on using social theory in a thesis, for the Arts & Social Sciences HDR student conference, UNSW Sydney.

19 August: Deborah gave an invited presentation to the UNSW Sydney Pioneers alumni association about her research on digital health.

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5 September: Clare gave a presentation on her chapter (co-authored with Miranda Bruce) about intimacies and the impersonal in ‘Black Mirror’, published in the edited volume Social Beings, Future Belongings (Routledge) at the book launch, ANU, Canberra. Her presentation and others at the launch can be viewed here.

 
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9 September: Ashleigh ran a zine-making workshop at the Vitalities Lab on the theme of ‘algorithmic micropolitics’. A blog post about the workshop and the zine itself that was collaboratively made by participants can be found here.

10 September: Deborah gave an invited presentation at the ‘Bioethics Colloquium’, convened by UNSW and the South East Sydney Local Health District Clinical Ethics Service

Call for submissions: So Fi Zine

So Fi.jpgAshleigh has launched the call for submissions for So Fi Zine edition #6 – So Fi Zine is a sociological fiction zine for arts-based research, creative sociology, and art inspired by social science. The zine publishes short stories, poetry, photography, photo essays, cartoons, and other creative works. Edition #6 will be published in November 2019 and is inspired by Deborah Lupton’s digital, creative, more-than-human and future oriented research. Pieces are invited that creatively explore sociological futures: bodies, spaces, disciplines and things. Submission info and previous edition of the zine can be found here.

 

 

Media appearances

  • Deborah wrote an article for The Conversation on portrayals of heart disease in the popular media. She did follow-up interviews on ABC Sydney, Melbourne and Far South Coast radio
  • Deborah’s research on people’s use of digital health was quoted in an ABC Life online article about health apps

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.

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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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Vitalities Lab Newsletter Number 3

 

VITALITIES LAB NEWSLETTER

Number 3, 25 June 2019

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

New Publications

  1. Lupton, D. (2019) ‘I’d like to think you could trust the government, but I don’t really think we can’: Australian women’s attitudes to and experiences of My Health Record. Digital Health, 5, online, available at https://journals.sagepub.com/doi/full/10.1177/2055207619847017

Presentations

13 May: Deborah was the convenor and one of the panel speakers at the UNSW Grand Challenges Event ‘Shaping our digital future’. The event was chaired by Matthew Kearnes, UNSW Sydney, and the two other panel members were Sarah Pink, Monash University, and Amanda Third, Western Sydney University (pictured below, with Amanda seated between Deborah and Sarah).

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11 June 2019: Deborah gave a keynote at the Digitally Engaged Patient conference, University of Copenhagen

13 June 2019: Deborah gave a seminar presentation at King’s College, London

13 June 2019: Deborah gave a seminar presentation at the London School of Economics

14 June 2019: Deborah gave a keynote at the Surveillance in the 21st Century early career workshop, Royal Holloway University of London (the Founder’s Building at Royal Holloway is pictured above).

Workshops

In May, Deborah held two workshops at UNSW Sydney on using image cards for social research. Her reflections on the workshops and methods can be found here.

Media Appearances

Deborah was quoted about her research on My Health Record in for an article published in Government News: https://www.governmentnews.com.au/government-too-incompetent-for-digital-health/

Deborah was quoted about her research on fat politics in SBS ‘The Feed’ online: https://www.sbs.com.au/news/the-feed/man-asked-to-move-from-emergency-exit-seat-claims-he-was-fat-shamed

Deborah was quoted in an article on fitness trackers in the New Zealand Listener news and current affairs magazine (8 June edition)

Other News

Deborah published a short document collecting together six of her popular blog posts providing tips and advice for successful academic research. The PDF can be accessed here.

With co-editor Zeena Feldman, Deborah completed work on their edited volume Digital Food Cultures for Routledge’s Critical Food Studies book series. The book is now in production and will be published in early 2020.

Working with image cards in social research

As part of my experiments with innovative methods for social research and developing design sociology, I have been using a set of image cards developed by Dan Lockton and his team at the Imaginaries Lab for their New Metaphors workshops. Dan has kindly made these resources open access (see here). The cards consists of two types: 1) a range of diverse images of things, activities and experiences that exist in people’s everyday lives (natural phenomena like clouds, rain, trees or animals and things from built environments such as cracks in pavements, graffiti and the hum of a fridge); and 2) a range of topics, concepts or ideas (for example, safety, love, fame, half-remembered dreams and personal security). I printed out a set of the New Metaphors cards, and over the past two weeks have run two pop-up methods workshops at my Vitalities Lab to experiment with them.

The two groups who came along to the workshops (there were about 15 people at the first one and ten at the second workshop) participated in activities that I devised, and then provided feedback on how they found the activities and how they thought they could use the cards in their own research or teaching. The feedback from both workshop groups was very positive: members enjoyed working with these cards and thinking about how they could use them.

At the first workshop, I used a worksheet I downloaded from the Imaginaries Lab and a research activity worksheet that I had crafted myself. After the first workshop, I developed a new worksheet, and renamed the activity ‘Vital Images Method’ to better describe what I was wanting to do with it. The two worksheets I developed are provided  below. They can be downloaded at the links here as well: VITAL IMAGES METHOD – worksheet 1 VITAL IMAGES METHOD – worksheet 2

VITAL IMAGES METHOD: WORKSHEET 1

Image [title]:   _______________________________

Choose an image card. Describe what you think of, see, feel when you look at this image.

Topic [title]: ___________________________________________

Choose a topic card. Describe what you think of, see, feel when you consider this topic.

Circle words that are shared. What are the similarities and differences? What new or surprising connections do you see?

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Worksheet 1

 

VITAL IMAGES METHOD: WORKSHEET 2

 People can work as individuals, in pairs or in small groups.

Identify a topic (e.g. big data, apps, data privacy, smartphones, fitness, exercise, good health, a specific health condition, a risk or threat) that you would like your research participants to focus on.

Ask your participants to sort through the image cards and pull out some (say three or four cards) that they associate with the topic (in present day or a specified period into the future [10 years, 20 years etc]). Ask them to reflect on these questions (they can write these reflects down or record them using a voice recording device):

  1. What do these images mean to you in relation to the topic?
  2. Why do you think you chose them?
  3. What feelings/emotions do they inspire in relation to this topic?
  4. Did these images provoke new connections or ideas for you?
  5. Did you make any connections or ideas that surprised you?

Alternative approach: rather than ask participants to choose image cards, provide them with cards randomly, and ask them to undertake the same reflections.

Extensions

  1. Make a drawing or map of the connections you see between the image and the topic.
  2. Write a short story or make a story board based on the ideas generated by the images.
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Worksheet 2

 

Analysis

The participants’ reflections can be used as research data – as a way of inquiring into the often unrecognised or unacknowledged memories, feelings and associations that people draw on to give meaning to their worlds.