COVID society – some resources I have put together for social researchers

 

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Over the past fortnight, I’ve put together a few open-access resources concerning what an initial agenda for COVID-related social research could be and research methods for conducting fieldwork in the COVID world.

Links are below:

Conducting  Fieldwork in a Pandemic (Google Doc crowd-sourced resource)

Social Research for a COVID and post-COVID World: An Initial Agenda (blog post)

Conducting Qualitative Fieldwork During COVID-19 (PowerPoint slides) (Webinar presentation with voice and slides)

 

Photo credit: Daniel Tafjord on Unsplash

 

My 2019 publications

Books

Reports

Lupton, D. (2019) The Australian Woman and Digital Health Project: Comprehensive Report of Findings. Canberra: News & Media Research Centre.

Book chapters

  • Lupton, D. (2019) Vitalities and visceralities: alternative body/food politics in digital media. In Phillipov, M. and Kirkwood, K. (eds), Alternative Food Politics: From the Margins to the Mainstream. Routledge: London, pp. 151-168.
  • Lupton, D. (2019) Digital sociology. In Germov, J. and Poole, M. (eds), Public Sociology: An Introduction to Australian Society, 4th St Leonards: Allen & Unwin., pp. 475-492.

Journal articles

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

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.

 

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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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

My 2017 publications

Books

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

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

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

Special journal issues edited

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

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

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

Book chapters

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

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

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

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

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

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

Journal articles

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Editorials

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

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

Food porn, fitspo, bonespo and epic food feats: bodies and food in digital media

 

I have just finished a book chapter for a edited collection on alternative food politics. The chapter is entitled ‘Vitalities and visceralities: alternative body/food politics in new digital media’ (the full chapter preprint is available here).

In the chapter, I focus on the ways in which human bodies and food consumption are represented in social media platforms like Facebook, Tumblr, Twitter, YouTube and Instagram using visual media such as selfies, videos, memes and GIFs, and organised with the use of hashtags. Once I began searching for this material online (using search terms like ‘fat memes’, ‘food porn’, ‘food GIFs’, ‘fitspo’, ‘vegetarian’ and ‘pro ana’), the strength of emotions expressed about bodies and food was particularly noticeable.

Bodies and food in digital portrayals express and circulate visceral feelings that are often dark, centring around broader ambivalences concerning human and nonhuman corporeality. For example, disgust and repulsion for food that is not ‘clean’ or is high in calories and for fat bodies that are considered to be undisciplined was a key theme. This reached its apotheosis in images and discussions relating to self-starvation practices, in which food consumption of any kind was portrayed as contaminating the ideal of the extremely thin body.

A contrasting portrayal, however, was that of the transgressive pleasures of excessive food consumption, often as resistance to body shaming and food policing. In the digital media I examined, vegetarians and vegans were often positively portrayed for their ethical and healthy food stance, but also derided as bores and moralisers. The promotion of fleshiness and excessive food consumption was found in fat activist and body positivist digital media, but also in the grotesque feats of cooking and eating dude food performed by the ‘Epic Meal Time’ men and food-related GIFs and memes.

Food consumption in these media was often sexualised. People uploading or sharing ‘fitspo’ images idealised slim, toned bodies, both male and female, displaying their physiques in tight, revealing gym or swim wear. Supporters of the pro-anorexia ‘bonespo’ meme portrayed emaciated young women as beautiful and sexually appealing. The ‘notyourgoodfatty’ approach highlighted the sensuality and erotic appeal of both fat bodies and excessive food consumption.

More disturbingly, the ‘Epic Meal Time’ YouTube videos made frequent references to the erotic appeal of meat the suggested women were meat for the consumption of men. This misogynistic approach was even more evident in memes and GIFs about meat, in which men were portrayed as aggressors and women their prey.

I conclude the chapter by arguing that expressions of alternative food politics in new digital media are underpinned by affects that display broad and deep-seated ambivalences about what kind of food is morally and ethically justifiable and what types of bodies people should seek to achieve. In some cases, the emotional power that animate the agential capacities of these types of media can impel transformation and change in the interests of alternative food politics. In others, they express and facilitate conservative and reactionary responses, serving to reproduce and magnify dominant norms, moral meanings and practices about ideal bodies, sexuality, and gender.

Affective atmospheres and digital health

I have just submitted an essay for the special issue of Digital Health I am editing on the senses and digital health. In the essay I outline how the concept of affective atmospheres can be used to understand how and why people use or fail to take up digital health technologies, with a particular focus on the sensory and affective dimensions of these responses. The preprint version is available here, and the abstract is below.

The concept of affective atmospheres has recently emerged in cultural geography to refer to the feelings that are generated by the interactions and movements of human and nonhuman actors in specific spaces and places. Affective atmospheres can have profound effects on the ways in which people think and feel about and sense the spaces they inhabit and through which they move and the other actors in those spaces. Thus far, very little research has adopted this concept to explore the ways in which digital health technologies are used. As part of seeking to redress this lacuna, in this essay I draw on previously published literature on affective atmospheres to demonstrate and explain the implications of this scholarship for future theoretical and empirical scholarship about digital health practices that pays attention to their affective and sensory elements. The article is structured into six parts. The first part outlines the concepts and research practices underpinning affective atmospheres scholarship. In the second part, I review some of the research that looks at place, space and mobilities in relation to affective atmospheres. In the third part I go on to focus more specifically on the affective atmospheres of medical encounters, and then move on to digital technology use in the fourth part. I then address in the fifth part some relevant scholarship on digital health technologies. I end the essay with some reflections of directions in which future research taking up the concept of affective atmospheres in the context of digital health technologies can go. The key research question that these topics all work towards is that asking ‘How does digital health feel?’

Cashing in on patients’ experiences: the commodification of patient support and opinion websites

English: The PatientsLikeMe Profile of Stephen...

English: The PatientsLikeMe Profile of Stephen Heywood, brother of the co-founders of the company, who was diagnosed with ALS when he was 29 years old. This profile describes his experience with the disease including his functional rating scale, treatments, symptoms, breathing capacity, and weight. (Photo credit: Wikipedia)

As part of the digital health phenomenon, a plethora of interactive digital platforms have been established in recent years to elicit lay people’s experiences of illness, medical treatments and healthcare. These include such sites as PatientsLikeMe, Smart Patients, Health Unlocked, CarePages and Cure Together, as well as many condition-specific sites.

The function of these platforms, as expressed on the main pages of their websites, is to provide the tools and forums whereby patients and caregivers, and in cases medical practitioners, can share their experiences with others, benefit from the support and knowledge of other contributors, comment on healthcare providers and contribute to large aggregated data archives as part of developing better medical treatments and services and conducting medical research. However what may not always be readily apparent to the users of these platforms are the growing commercial uses by some of the platforms’ owners of the archives of the data they contribute.

I have just published a working paper (available here) in which I discuss what I term ‘the digital patient experience economy’. This term relates to patients’ online accounts and details of their medical conditions and their ratings and opinions of healthcare providers and institutions having become valued not only for the support and information they offer to other patients but also for the increasing commercial value they have for other actors. These data have become treated as another form of digital intellectual property, owned not by the patients themselves but by the companies that encourage patients to upload their experiences that accumulate in the data archives they own and over which they have control. While some of these platforms are not-for-profit and operate solely as forums for patients to interact with each other or to report their experiences with healthcare providers (for example, Patient Opinion), a growing number have been established by companies seeking to profit from the harvesting of these data and on-selling them to their clients.

Lay people’s experiences and opinions as they are expressed in digital media forums, with all the suffering, hope, despair, frustration, anger and joy that are often integral aspects of coping or living with a medical condition or surgical procedures, have become commercial properties for market exchange. They are not offered and nor do they receive financial compensation for providing their experiences. The value they derive is non-commercial, while the exchange value of the data they upload is accumulated by the for-profit companies that provide the platforms for patients to share their experiences or trawl the web to harvest the data and render it into a form that is valuable for commercial entities.

As I argue in the working paper, patients may benefit in many ways from the affective labour in which they engage as part of contributing to these websites. Research suggests that many patients appreciate the greater access to information about their conditions and the emotional support, opportunity to express themselves, feeling part of a community and greater sense of control over their illness that they may gain from their participation in such forums. They may further gain satisfaction from contributing to scientific research, the production of better understanding of their condition or the provision of facilities or improved healthcare that may benefit themselves or others with their condition.

However many contributors may not be aware of the ways in which the data they upload may be harvested for commercial purposes. The overt rhetoric of the for-profit platforms on their main pages emphasises patient support and the democratic sharing of data for the good of all. The information about how these data are monetised for the benefit of the platforms’ owners is often buried in ‘terms and conditions’ or ‘privacy policy’ pages that people who join as members may not bother to read or may not fully understand.

The use value of the data produced by contributors is restricted by the limits imposed by the platform they are using. Indeed it can be extremely difficult for people to retrieve for their own purposes the data they upload to patient experience platforms, enter as part of their electronic medical records or that are generated as part of their participation in clinical trials. Contributors’ efforts to collate their own small data aggregates may be frustrated in the face of the interests of commercialised big data: hence the recent development of the Small Data website, designed to assist them to gain access to their data.

We know little about to what extent the people who contribute to these sites are aware of how their data are used by third parties, commercially or otherwise; how they feel about this use if they are aware of it; how they experience the sites as users; and to what extent they may wish to gain access to their own data for their own purposes. I argue, therefore, that patients’ opinions and illness narratives may be expressed in more diverse and accessible forums than ever before, but simultaneously they have become exploited in novel ways in the era of digital health.