My new book Data Selves: More-than-Human Perspectives has now been released by Polity Press. In the book, I draw on feminist new materialism theory and the anthropology of material culture as well as analyses of popular culture and findings from my empirical studies talking to people about their personal data. I argue that personal data are more-than-human phenomena, invested with diverse forms of vitalities, and reveal the significant implications for data futures, politics and ethics. The book is a companion to my previous Polity book The Quantified Self: A Sociology of Self-Tracking.
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, 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.
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.
- 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
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.
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.
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)
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
I am giving some talks in Copenhagen and London next month. Here is the schedule for those who might want to come along.
- 11-12 June: Keynote at the Digitally Engaged Patient conference, University of Copenhagen
- 13 June: Presentations at King’s College London (in-conversation on smart technologies and global health) and LSE Department of Media and Communications (in-house seminar about my new book Data Selves)
- 14 June: Keynote at the Surveillance in the 21st Century event, Royal Holloway, University of London
VITALITIES LAB NEWSLETTER
Number 2, 29 April 2019
The Vitalities Lab is led by SHARP Professor Deborah Lupton, Centre for Social Research in Health and Social Policy Research Centre, UNSW Sydney. Further details here.
- Lupton, D. (2019) Towards a more-than-human analysis of digital health: inspirations from feminist new materialism. Qualitative Health Research, online first. doi.org/10.1177/1049732319833368
- Maslen, S. and Lupton, D. (2019) Enacting chronic illness with and through digital media: a feminist new materialist approach. Information, Communication and Society, online first. doi: 1080/1369118X.2019.1602665
- Lupton, D. and Leahy, D. (2019) Reimagining digital health education: the critical pedagogical and research possibilities of storyboarding. Health Educational Journal, doi:1177/0017896919841413
- Lupton, D. (2019) ‘It’s made me a lot more aware’: a new materialist analysis of health self-tracking. Media International Australia, doi:org/10.1177/1329878X19844042
- Deborah Lupton: ‘The internet both reassures and terrifies’: using the story completion method for health research. Presentation for the Centre for Social Research in Health Seminar Series, 2 April 2019
- Deborah Lupton: ‘”Smart” health promotion: a perspective from digital sociology’. Invited presentation at a sub-plenary on smart health promotion, International Union for Health Promotion and Education World Conference, Rotorua, New Zealand, 10 April 2019
- Deborah Lupton: ‘The more-than-human worlds of self-tracking for health and fitness’. Keynote at the World Congress of the Sociology of Sport, Dunedin, New Zealand, 24 April 2019
- 6 May: Deborah will be holding a Vitalities Lab in-house pop-up methods workshop using the ‘New Metaphors’ inspiration cards
- 7 May: Deborah is presenting a workshop on ‘Increasing your academic visibility’. Registration is free and open to all. Further details here.
- 13 May: Deborah is the convenor and one of the panel speakers at the UNSW Grand Challenges Event ‘Shaping our digital future’. Registration is free and open to all. Further details here.
- The Vitalities Lab has a doctoral research stipend worth $30,000 annually for four years for a domestic candidate who meets UNSW Sydney requirements for doctoral admission and wishes to pursue a project related to the Lab’s research directions. Contact Deborah Lupton (firstname.lastname@example.org for further details).
- Research practicums are also available for international doctoral students who are pursuing their studies at a university outside Australia to spend a period of time as a visiting researcher at the Vitalities Lab under Deborah Lupton’s supervision. Tuition fees apply. Further details are available here.
- Lupton, D. (2018) Fat (revised 2nd edition). London: Routledge.
- 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.
- Lupton, D. (2018) Towards design sociology. Sociology Compass, 12(1), online, available at http://onlinelibrary.wiley.com/doi/10.1111/soc4.12546/full
- Lupton, D., Pink, S., Heyes Labond and Sumartojo, S. (2018) Personal data contexts, data sense and self-tracking cycling. International Journal of Communication, 11, online, available at http://ijoc.org/index.php/ijoc/article/view/5925/2258
- Pedersen, S. and Lupton, D. (2018) ‘What are you feeling right now?’ Communities of maternal feeling on Mumsnet. Emotion, Space & Society, 26, 57-63.
- Lupton, D. and Turner, B. (2018) ‘I can’t get past the fact that it is printed: consumer attitudes to 3D printed food’. Food, Culture and Society, online ahead of print: doi: org/10.1080/15528014.2018.1451044
- Lupton, D. (2018) ‘I just want it to be done, done, done!’ Food tracking apps, affects and agential capacities. Multimodal Technologies and Interaction, 2(2), online, available at http://www.mdpi.com/2414-4088/2/2/29/htm
- Lupton, D. (2018) How do data come to matter? Living and becoming with personal data. Big Data & Society, 5(2), online, available at https://doi.org/10.1177/2053951718786314
- Lupton, D. and Maslen, S. (2018) The more-than-human sensorium: sensory engagements with digital health technologies. The Senses and Society, 13(2), 190—202.
- Salmela, T., Valtonen, A. and Lupton, D. (2018) The affective circle of harassment and enchantment: reflections on the ŌURA ring as an intimate research device. Qualitative Inquiry, online ahead of print, org/10.1177/1077800418801376
- Thomas, G., Lupton, D. and Pedersen, S. (2018) ‘The appy for a happy pappy’: expectant fatherhood and pregnancy apps. Journal of Gender Studies, 27(7), 759-770.
- Maslen, S. and Lupton, D. (2018) “You can explore it more online”: a qualitative study on Australian women’s use of online health and medical information. BMC Health Services, 18(1) online, available at https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-018-3749-7
- Lupton, D. (2018) ‘Better understanding about what’s going on’: young Australians’ use of digital technologies for health and fitness. Sport, Education and Society, online ahead of print, doi:1080/13573322.2018.155566
- Lupton, D. and Turner, B. (2018) Food of the future? Consumer responses to the idea of 3D printed meat and insect-based products. Food and Foodways, online ahead of print, doi:1080/07409710.2018.1531213
- Lupton, D. (2018) 3D printing. In Ritzer, G. (ed), The Blackwell Encyclopedia of Sociology. Online. Available at https://onlinelibrary.wiley.com/doi/abs/10.1002/9781405165518.wbeos1072
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
|Number of respondents (n=30)|
|doctors and other health care providers||30|
|friends and family||21|
|online discussion forums||12|
|social media groups||10|
|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.
Today I attended a workshop to learn how to draw graphic narratives — in effect, comic strips. I was interested in learning this technique as research translation and engagement tool. I thought that it could be a fun way to visually represent findings from a research project. The method can also be used to plan research projects, as an alternative to tools such as mind-mapping or concept-mapping. The idea is that using a comic-strip format helps to simplify issues and present them in narrative formats.
We focused in the workshop on the best way to represent emotional states using simple drawing techniques. We started with drawing Donald Trump’s grumpy face using several different methods. Here’s the last Trump drawing I produced. We only had a minute to draw this one.
Then we moved on to practising drawing different facial expressions to convey emotion. Here I am working hard on this task.
We finished the workshop with a big task, which involved drawing a comic strip on a topic we had chosen. I decided to try and represent some research findings from a current project I have been analysing interview data from: on young people’s use of digital health. The project’s findings showed that young people constantly google health information and appreciate learning about the experiences of other young people, so that they feel less alone. YouTube is one source where they can find other young people talking about their health and illness experiences. But young people are also willing to seek medical advice if they feel this is needed. I tried to convey these key findings in my comic strip.
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
- 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.
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.
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.
Provide an opening to a story and ask the participants to complete it.
“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?
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?
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.
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.
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.
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.