When data do not make sense

One of my current areas of research interests focuses on how to conceptualise digital data and the ways in which humans make sense of their personal data. Next week I am attending a workshop in Copenhagen run as a part of a series convened by RMIT’s Data Ethnographies Lab. We are addressing the topic of ‘broken data’, or digital data that for some reason do not work, are considered useless or fail to make sense to the people reviewing them.

Drawing on some of my own concepts of digital data, I have produced the following metaphorical alternatives to that of ‘broken data’.

Metaphor 1: if data are liquid, then …

  • there can be blockages in data flows
  • moving data can become stuck
  • contained data can become out of control (like tsunamis or floods)
  • liquid data can become frozen

Metaphor 2: if data are lively, or companion species, then …

  • alive data can die
  • domesticated data can become wild
  • fresh data can decompose
  • healthy data can become sick

Metaphor 3: if data can be eaten/consumed, then …

  • data can become self or considered not-self
  • data can be incorporated or not incorporated
  • data can be digestible or indigestible
  • data can be edible or inedible

 

 

 

 

Lively devices, lively data and lively leisure studies

This is a foreword I wrote for a Leisure Studies special issue on digital leisure cultures (the link to the journal version is here).

In the countries of the Global North, each person, to a greater or lesser degree, has become configured as a data subject. When we use search engines, smartphones and other digital devices, apps and social media platforms, and when we move around in spaces carrying devices the record our geolocation or where there are embedded sensors or cameras recording our movements, we are datafied: rendered into assemblages of digital data. These personal digital data assemblages are only ever partial portraits of us and are constantly changing: but they are beginning to have significant impacts on the ways in which people understand themselves and others and on their life opportunities and chances. Leisure cultures and practices are imbricated within digital and data practices and assemblages. Indeed, digital technologies are beginning to transform many areas of life into leisure pursuits in unprecedented ways, expanding the purview of leisure studies.

These processes of datafication can begin even before birth and continue after death. Proud expectant parents commonly announce pregnancies on social media, uploading ultrasound images of their foetuses and sometimes even creating accounts in the name of the unborn so that they can ostensibly communicate from within the womb. Images from the birth of the child may also become publicly disseminated: as in the genre of the childbirth video on YouTube. This is followed by the opportunity for parents to record and broadcast many images of their babies’ and children’s lives. At the other end of life, many images of the dying and dead bodies can now be found on the internet. People with terminal illnesses write blogs, use Facebook status updates or tweet about their experiences and post images of themselves as their bodies deteriorate. Memorial websites or dedicated pages on social media sites are used after people’s death to commemorate them. Beyond these types of datafication, the data generated from other interactions online and by digital sensors in devices and physical environments constantly work to generate streams of digital data about people. In some cases, people may choose to generate these data; in most other cases, they are collected and used by others, often without people’s knowledge or consent. These data have become highly valuable as elements of the global knowledge economy, whether aggregated and used as big data sets or used to reveal insights into individuals’ habits, behaviours and preferences.

One of my current research interests is exploring the ways in which digital technologies work to generate personal information about people and how individuals themselves and a range of other actors and agencies use these data. I have developed the concept of ‘lively data’, which is an attempt to incorporate the various elements of how we are living with and by our data. Lively data are generated by lively devices: those smartphones, tablet computers, wearable devices and embedded sensors that we live with and alongside, our companions throughout our waking days. Lively data about humans are vital in four main respects: 1) they are about human life itself; 2) they have their own social lives as they circulate and combine and recombine in the digital data economy; 3) they are beginning to affect people’s lives, limiting or promoting life chances and opportunities (for example, whether people are offered employment or credit); and 4) they contribute to livelihoods (as part of their economic and managerial value).

These elements of datafication and lively data have major implications for leisure cultures. Research into people’s use of digital technologies for recreation, including the articles collected here and others previously published in this journal, draws attention to the pleasures, excitements and playful dimensions of digital encounters. These are important aspects to consider, particularly when much research into digital society focuses on the limitations or dangers of digital technology use such as the possibilities of various types of ‘addiction’ to their use or the potential for oppressive surveillance or exploitation of users that these technologies present. What is often lost in such discussions is an acknowledgement of the value that digital technologies can offer ordinary users (and not just the internet empires that profit from them). Perspectives that can balance awareness of both the benefits and possible drawbacks of digital technologies provide a richer analysis of their affordances and social impact. When people are using digital technologies for leisure purposes, they are largely doing so voluntarily: because they have identified a personal use for the technologies that will provide enjoyment, relaxation or some other form of escape from the workaday world. What is particularly intriguing, at least from my perspective in my interest in lively data, is how the data streams from digitised leisure pursuits are becoming increasingly entangled with other areas of life and concepts of selfhood. Gamification and ludification strategies, in which elements of play are introduced into domains such as the workplace, healthcare, intimate relationships and educational institutions, are central to this expansion.

Thus, for example, we now see concepts of the ‘healthy, productive worker’, in which employers seek to encourage their workers to engage in fitness pursuits to develop highly-achieving and healthy employees who can avoid taking time out because of illness and operate at maximum efficiency in the workplace. Fitness tracker companies offer employers discounted wearable devices for their employees so that corporate ‘wellness’ programs can be put in place in which fitness data sharing and competition are encouraged among employees. Dating apps like Tinder encourage users to think of the search for partners as a game and the attractive presentation of the self as a key element in ‘winning’ the interest of many potential dates. The #fitspo and #fitspiration hashtags used in Instagram and other social media platforms draw attention to female and male bodies that are slim, physically fit and well-groomed, performing dominant notions of sexual attractiveness. Pregnancy has become ludified with a range of digital technologies. Using their smartphones and dedicated apps, pregnant women can take ‘belfies’, or belly selfies, and generate time-lapse videos for their own and others’ entertainment (including uploading the videos on social media sites). 3D-printing companies offer parents the opportunity to generate replicas of their foetuses from 3D ultrasounds, for use as display objects on mantelpieces or work desks. Little girls are offered apps which encourage then to perform makeovers on pregnant women or help them deliver their babies via caesarean section. In the education sector, digitised gamification blurs leisure, learning and physical fitness. Schools are beginning to distribute heart rate monitors, coaching apps and other self-tracking devices to children during sporting activities and physical education classes, promoting a culture of self-surveillance via digital data at the same time as teachers’ monitoring of their students’ bodies is intensified. Online education platforms for children like Mathletics encourage users to complete tasks to win medals and work their way up the leaderboard, competing against other users around the world.

In these domains and many others, the intersections of work, play, health, fitness, education, parenthood, intimacy, productivity, achievement and concepts of embodiment, selfhood and social relations are blurred, complicated and far-reaching. These practices raise many questions for researchers interested in digitised leisure cultures across the age span. What are the affordances of the devices, software and platforms that people use for leisure? How do these technologies promote and limit leisure activities? How are people’s data used by other actors and agencies and in what ways do these third parties profit from them? What do people know about how their personal details are generated, stored and used by other actors and agencies? How do they engage with their own data or those about others in their lives? What benefits, pleasures and opportunities do such activities offer, and what are their drawbacks, risks and harms? How are the carers and teachers of children and young people encouraging or enjoining them to use these technologies and to what extent are they are aware of the possible harms as well as benefits? How are data privacy and security issues recognised and managed, on the part both of those who take up these pursuits voluntarily and those who encourage or impose them on others? When does digitised leisure begin to feel more like work and vice versa: and what are the implications of this?

These questions return to the issue of lively data, and how these data are generated and managed, the impact they have on people’s lives and concepts of selfhood and embodiment. As I noted earlier, digital technologies contribute to new ways of reconceptualising areas of life as games or as leisure pursuits that previously were not thought of or treated in those terms. In the context of this move towards rendering practices and phenomena as recreational and the rapidly-changing sociomaterial environment, all social researchers interested in digital society need to be lively in response to lively devices and lively data. As the editors of this special issue contend, researching digital leisure cultures demands a multidisciplinary and interdisciplinary perspective. Several exciting new interdisciplinary areas have emerged in response to the increasingly digitised world: among them internet studies, platform studies, software studies, critical algorithm studies and critical data studies. The ways in which leisure studies can engage with these, as well the work carried out in sub-disciplines such as digital sociology, digital humanities and digital anthropology, have yet to be fully realised. In return, the key focus areas of leisure studies, both conceptually and empirically – aspects of pleasure, performance, politics and power relations, embodiment, selfhood, social relations and the intersections between leisure and work – offer much to these other areas of enquiry.

The articles published in this special issue go some way to addressing these issues, particularly in relation to young people. The contributors demonstrate how people may accept and take up the dominant assumptions and concepts about idealised selves and bodies expressed in digital technologies but also how users may resist these assumptions or seek to re-invent them. As such, this special issue represents a major step forward in promoting a focus on the digital in leisure studies, working towards generating a lively leisure studies that can make sense of the constantly changing worlds of lively devices and lively data.

Review of Social Media for Academics

I have written many times on this blog about my own experiences of using social media and other digital tools for academic work and my research focusing on how other academics are doing this.

One of the people I have encountered along the way is Mark Carrigan, an early career British sociologist. Appropriately enough, we first met on Twitter a few years ago, around the time I began experimenting with various digital tools for professional purposes. Since then, we have had many discussions there and on other online forums, as well as by email, about using social media in universities (and a couple of in-person meetings as well). Mark has now written a book on Social Media for Academics. It is the first book I know of to present a ‘how-to’ manual combined with reflections on the wider implications of  academic social media engagement.

Mark is a great example of someone who has strategically used social media while still in the very early stages of his career (completing his doctorate) to create a high profile for his work. He has now built on this experience not only to work in various positions involving promoting academic journals, departments and organisations, but to produce this book. In its chapters, Mark employs a casual, chatty style to painlessly introduce readers to the art of academic social media.

The book is distinctive because Mark’s sociological training allows him to contextualise the social, cultural and political implications of academic social media use. Yes, he offers  a multitude of helpful tips and advice about how best to communicate online, what platforms and tools are the most effective, how to develop your own voice, how online engagement helps in promoting one’s research and reaching wider audiences outside academia, building networks, curating interesting material you have found on the internet, finding time to use social media and so on. But there are also reflections offered on what academic social media means for professional identities and for academic work in general. In addition there are many pithy remarks drawing on Mark’s observations, for example, of the awkwardness that sometimes accompanies the experience of colleagues meeting in the flesh after having developed a hitherto purely online relationship, or the potential pitfalls of live-tweeting conferences or writing a tweet or blog post in haste and anger that then becomes widely circulated well after the initial irritation has subsided.

This book is highly recommended for higher degree students and faculty staff members who are interested in the possibilities of academic social media for both research and teaching, as well as researchers interested in future directions for the university workplace and academic identities.

 

Digitised dissection: medical procedures on the internet

 

This is an excerpt from my book in progress, Digital Health: Critical Perspectives, to be published by Routledge in 2017.

With the advent of websites, social media platforms and apps, the internal organs and workings of the body have moved from being exclusively the preserve of medical students and surgeons. Digital medical devices have entered into the public arena of the internet, offering new possibilities for lay people to gaze inside the spectacle of the human body. A vast volume of computerised medical images of human life from conception to death are now readily available online. Tapping in such keywords as ‘human anatomy’ will call up many apps on the Apple App Store or Google Play which provide such details. While these apps have been explicitly designed for the use of medical and other healthcare students and trainees, they are readily available to any person who may wish to download them. The Visible Human Project developed by the US National Library of Medicine is an earlier example of how human flesh can be rendered into a digital format and placed on the internet for all to view. The developers of The Visible Human Project used digital technologies to represent in fine detail the anatomical structure of two cadavers (one male and one female). Each body was cross-sectioned transversely from head to toe. Images of the sections of the bodies using MRI and CT scans and anatomical images were uploaded to the Project website. They can also be viewed at the National Museum of Health and Medicine in Washington DC. A similar website, The Visible Embryo, displays images of embryos and foetuses from fertilisation to birth, with a week-by-week display showing the stages of foetal development. The data used for this website were drawn from digitising microscopic cross-sections of human embryo specimens held on slides in The National Institutes of Health’s Carnegie Collection of Embryos as well as from 3D and 4D digital foetal ultrasound images.

Many opportunities are provided on the internet for people who want to view detailed images of surgical and other medical procedures in their full gory detail. YouTube has become a major provider of anatomical and surgical technique videos for medical training. Some medical specialists and surgeons upload images and videos of their work to Snapchat and Instagram, mostly in the effort to promote their services (cosmetic surgeons are in the forefront in this practice). Instagram does not allow users to upload images that are considered too explicit (such as those portraying surgery on breasts or genitals), so some doctors have turned to Shapchat as an alternative forum. One infamous such specialist is Sandra Lee, a dermatologist known as ‘Dr Pimple Popper’. Her Instagram photos and YouTube videos showing her at work have received many millions of views. Perhaps the best-known Snapchatting medical specialist is the cosmetic surgeon ‘Dr Miami’ (Michael Salzhauer), who uploads detailed photos and videos of his surgical procedures (including controversial procedures like labiaplasties, or surgery designed to reshape women’s external genitals). ‘Dr Miami’ is unafraid to Snapchat images of himself brandishing a wad of body fat he has just excised in a tummy tuck. He employs two full-time staff members to manage his social media accounts.

The use of web-streaming services is employed by a number of hospitals to host webcasts of surgical procedures for any interested person to view. The US National Library of Medicine provides a list on its website of several such webcasts with hyperlinks, from numerous different American hospitals. Lay people may now even view live-streamed surgical procedures using a smartphone app and wearing a virtual reality headset to provide a 3D immersive effect, as offered by the Medical Realities company in April 2016. This technology is designed principally for training medical students, but also allows lay people who participate to feel as if they present in the operating theatre.

Pinterest, an image-curating and sharing platform, features many collections of images related to medical matters. Several of these relate to patient experiences of health, but others are curated by medical and nursing students and practising healthcare providers. Some are humorous, featuring memes, cartoons or other images designed to appeal to medical and nursing students and other trainees in the health professions. Other Pinterest photographs feature novelty commodities, again clearly directed to the same audience (for example, anatomical heart or ECG heart beat cookie cutters, human-organ and stethoscope-shaped jewellery, coffee mugs in the shape of spinal vertebrae). While these images are vastly outnumbered by the serious photographs in Pinterest collections that show anatomical images and other medical information (some of which are explicit photographic images that detail flesh, bone and blood), they offer alternative representations of the ways in which human bodies and the practice of healthcare are represented online.

The major differences offered by the latest digital technologies that document and monitor the human body are the continual nature of the surveillance opportunities they present, their expansion from the clinic into domestic and intimate spaces and relationships and their feedback mechanisms, which allow their subjects to ‘read’ and interpret their own bodies via biometric measurements. Medical practices that were once embodied in the flesh, including the development of doctors’ expertise in touching the patient’s body and determining what is wrong, have increasingly become rendered into software such as the video conferencing services offered in remote telemedicine technologies. Virtual bodies have been developed for medical training purposes, allowing students to conduct virtual surgery. To achieve this virtuality, the processes by which doctors practice – their customs, habits and ways of thinking – are themselves digitised. Both doctors and patients are rendered into ‘informatic “body objects”, digital and mathematical constructs that can be redistributed, technologized, and capitalized’ (Prentice, 2013: 20).

Many digital health technologies are directed at illuminating the exterior or interior of the human body with the use of metrics that may represent features of the body as numbers or graphs. The use of apps to collect information about body functions and movements, for example, generates a continuing set of images that represent the body. Biometric data serves first to fragment the body into digitised pieces of information and then to combine these pieces into a recombinant whole that is usually presented in some kind of visual form. Amoore and Hall (2009: 48) use the term ‘digitised dissection’ to refer to the ways in which biometric whole body scanners at airports operate. This term is even more apposite when adopted to discuss the fragmentation of bodies in the context of digital health. Digital technologies are able to peer into the recesses of the body in ever-finer detail, creating new anatomical atlases.

References

Amoore, L. & Hall, A. (2009) Taking people apart: digitised dissection and the body at the border. Environment and Planning D: Society and Space, 27, 444-64.

Prentice, R. (2013) Bodies in Formation: an Ethnography of Anatomy and Surgery EducationDurham, NC: Duke University Press.

 

 

 

My current research projects (June 2016)

I am working on a number of different projects at the moment. Here’s a list.

Digitised Pregnancy and Parenting This project involves several different elements, including a survey completed by 410 women around Australia and focus groups with women in Sydney who at the time of the survey/focus groups were either pregnant or had given birth in the past three years. It also involves a critical analysis of pregnancy and reproduction apps and other digital devices for monitoring menstruation, fertility and pregnancy. Collaborators: Sarah Pedersen, Robert Gordon University, Aberdeen, and Gareth Thomas, Cardiff University. Articles published so far from this project can be found herehere, here (OA), here, here, here (OA) and here (OA). Blog posts about it are here and here.

Public Understandings of Big Data A study using cultural probes in focus groups held in Sydney to explore what people understand about how their personal data are collected and used. Collaborator: Mike Michael, University of Sydney. Articles published so far from this project can be found here (OA) and here and a blog post here.

Small Technology, Big Data and the Business of Young People’s Health This is an Australian Research Council Discovery Project involving interviews with and observations of teachers in Australian schools about how they use digital technologies in school health and physical education as well as a critical analysis of these technologies. Collaborators: Michael Gard, University of Queensland, Deana Leahy, Monash University, Melbourne and Carolyn Pluim, Northern Illinois University, USA. I have published an article and blog post related to this project.

Fabricated Food: Consumer Responses to 3D Printed Food This study used an online focus group discussion format to invite Australians to tell use what they thought about food fabricated from 3D printing technologies. Collaborator: Bethaney Turner, University of Canberra. A chapter from this project can be found here (OA).

Fitness Activity Analytics This project involves interviews with people in Canberra who are self-tracking their fitness activities. Collaborator: Glen Fuller, University of Canberra.

Cycling Commuting Self-Tracking Another project on self-tracking, this time involving people in Canberra and Melbourne who monitor their cycling commutes. This project used digital ethnography methods. The participants were interviewed about their practices and we also videoed them show us how they prepared for a ride and completed a ride. The participants used a Go Pro mini camera mounted on their helmets to video one of their cycling commutes as well. Collaborators: Sarah Pink and Shanti Sumartojo, RMIT University, Melbourne and Christine Heyes Labond, University of Canberra.

Why Do People Self-Track? A third study on self-tracking practices. This one takes a broader view, using the method of semi-structured telephone interviews to talk to Australians who self-track about why and how they do so. Collaborator: Gavin Smith, Australian National University.

Self-Tracking and Automatised Bodies Again focusing on self-tracking, this project involves the formation of an international research network, involving regular workshops and developing collaborative research. It is funded by the Swedish Foundation for Humanities and Social Sciences. Collaborators: Martin Berg, Professor Vaike Fors and Christopher Martin, Halmstead University, Sweden, Tom O’Dell, Lund University, Sweden, Sarah Pink, RMIT University and Minna Ruckenstein and Mika Pantzar, University of Helsinki, Finland.

Australians’ Use of Apps A survey of how Australians use apps: what types of apps they use, what devices they upload them to and how they use the apps. Collaborators: Scott Rickard and Sam Hinton, University of Canberra.

Digital Media, Food and Body Weight I am editing a special issue on digital media and body weight for the Fat Studies journal and working on a chapter about datafied bodies, food and digital technologies for a handbook on food and popular culture.

Digital Health: Critical Perspectives A sole-authored monograph to be published by Routledge, using sociocultural theory to cast a critical eye on a range of contemporary digital health technologies. Due for publication in 2017.

The Digital Academic An edited book, also for Routledge, bringing together contributors examining the implications of digital technologies for academic work and identities. Due for publication in 2017. Other editors: Inger Mewburn, Australian National University and Pat Thomson, Nottingham University, UK.

 

 

 

 

Digital risk society

An excerpt from a chapter I wrote for The Routledge Handbook of Risk Studies (2016). This is the introduction to the chapter. The pre-print of the full chapter is available open access here.

As social life and social institutions have become experienced and managed via novel forms of digital technologies, and as both public and personal spaces as well as human bodies have become increasingly monitored by digital surveillance devices and sensors, a new field of risk inquiry has opened up in response to what might be termed ‘digital risk society’.  The intersections between risk and digital technologies operate in several ways. First, the phenomena and individuals that are identified as ‘risks’ or ‘risky’ are increasingly configured and reproduced via digital media, devices and software. These technologies act not only as mediators of risk but frequently are new sources of risk themselves. Second, various uses of digital technologies are often presented as posing risks to users. In a third major dimension, members of some social groups are positioned in the literature on the ‘digital divide’ as at particular risk of disadvantage in relation to communication, education, information or better employment opportunities because they lack access to or interest or skills in using online technologies.

These three dimensions of digital risk society require new sources of theorising risk that are able to understand and elucidate the ways in which digitisation and risk intersect to create risk representations, mentalities and practices. This chapter addresses each one of these major dimensions in turn. Before doing so, however, it is important to introduce some of the perspectives that may be productively employed to theorise digital risk society. This involves moving away from approaches that traditionally have dominated risk sociology and embracing the ideas of writers in such fields as digital sociology, internet studies, new media and communication and surveillance studies.

Death and dying online

I am currently completing my new book, entitled Digital Health: Critical Perspectives (to be published by Routledge early next year). One of the chapters focuses on the ways in which human bodies are portrayed in digital media. I wanted to write some paragraphs about digital representations of dying and dead bodies, but not much previous research that I can find has addressed this issue. There is a growing body of literature on how the dead are memorialised on social media, but very little about actual images of the dying and dead online. This is interesting in itself, given that death is such a taboo and often avoided subject.

Here is some material I have found and included in the chapter.

It is now possible for audiences to find images of death and dying at all phases of human life. The Visible Human Project developed by the US National Library of Medicine is one example of how dead human flesh has been rendered into a digital format and placed on the internet for all to view. The Visual Human Project used computer technologies to represent in fine detail the anatomical structure of male and female cadavers. Each body was cross-sectioned transversely from head to toe and images of the sections of their bodies using magnetic resonance imaging, computed tomography and anatomical images were uploaded to a computer website and can also be viewed at the National Museum of Health and Medicine in Washington DC.

Social media platforms host images of dead bodies and first-person accounts of dying. One example that created controversy in the news media was the Instagram account of an American pathologist. She posted hundreds of images of autopsied corpses on her account, claiming it to be a form of public education. Another website, Unidentified Dead Bodies, has been established in India as a public service to assist with the identification of corpses. It features images of the bodies and details about where they were found, asking viewers to contact police or the coroner in charge of the case with any information they may have about the dead people portrayed on the site. A Chicago medical examiner’s office has undertaken a similar exercise, posting photographs of unidentified bodies that have come in for examination on its website. Several other examples of this type of publication of images of corpses can be found online. Indeed, simply typing in ‘unidentified dead bodies’ into a search engine gives ready access to many of these images.

Some people who have confronted a fatal illness have blogged about their experiences, presenting a written portrayal of their last days, sometimes accompanied by images of their failing bodies. There are numerous videos posted on YouTube showing the end of  life stages of mortally ill people, death and after-death scenes posted by friends or family members of the dead. Many memorial blogs and YouTube videos feature parents mourning pregnancy loss and stillborn infants, often featuring images of the dead foetuses or infants (I discuss this in my book The Social Worlds of the Unborn).

These are the kind of accounts and images of the dying and dead human body that until the advent of the internet would have received little or no exposure. While bereaved people in the Victorian era often had photographs taken of dead relatives, especially babies and children (sometimes with the living relatives posing alongside them), these images were kept to the private domain. Some may find these images distasteful, ghoulish or confronting. Yet advocates see their publication as a positive move towards better knowledge of death and dying.

 

Twitter and health

Surprisingly little research by sociologists or media studies researchers has investigated how Twitter is used to discuss health and medical issues. Yet there are many interesting issues and topics to explore.

The Healthcare Hashtag Project operated by Symplur, a healthcare social media analytics company, provides a publicly available online resource that demonstrates the diversity of health and medical topics that are discussed on Twitter. When I checked the website in early May 2016, the Project had identified close to 13,000 healthcare topics, over 10,000 hashtags related to healthcare and almost 4,000 contributors to these discussions on Twitter. The diseases that were receiving attention on Twitter on that day included breast cancer, migraine, brain tumours, lymphoma, heart disease, diabetes, lung cancer, attention deficit disorder and leukaemia (these were the top ten trending diseases in order).

The site also shows the ‘influencers’ in the Twitter discussions it documents as well as the latest tweets related to the hashtags it collects. This information demonstrates the sheer diversity of actors who engage in discussions about medical conditions and healthcare on Twitter. The top ten (by mentions) ‘influencers’ for the hashtag #BCSM (denoting ‘breast cancer social media’) were a clinical professor in surgery, four individual breast cancer survivors, a medical school and a research institute, two patient coalitions (one for men with breast cancer and one for young women with breast cancer) and the Journal of the American Medical Association.

The story is quite different if the hashtag #digitalhealth is examined. Another market research company has analysed over 200,000 tweets and almost 30,000 engaged users to identify the top influencers and brands in Twitter discussions using #digitalhealth. The company looked at tweets using this hashtag over a period of four months spanning January to April 2016 and produced a list of the top 100 influencers (based on PageRank analytics that takes into account the number and quality of textual references).

The first four influencers listed (who gained much higher influence scores than any of the 96 others on the list), included Hungarian doctor, genomic scientist, digital health consultant and self-described ‘medical futurist’ Bertalan Mesko, followed by American John Nosta, another digital health consultant who runs his own think tank and is a member of the Google Health Advisory Board. A British health technologist, Alex Butler is next and fourth is American Paul Sonnier, another digital health consultant. These influencers are followed by more representatives of private digital health consulting or technology companies, some tech journalists and a representative from massive American pharmaceutical chain Walgreens. Academics are not well represented in the top 20: only three appear, beginning from number 13 on the list. Practising doctors and individual patients, or organisations for doctors or patients, are scarce.

The most common topics discussed by the top influencers were data (by a long way, accounting for a quarter of the tweets), the Internet of Things and wearable tech. The topics of apps, cancer, artificial intelligence, cybersecurity and telemedicine were the next-most discussed (however, they all received less than 10 per cent of discussion across the tweets).

It is evident from this report that digital health discussions on Twitter (at least those that use #digitalhealth to signify their content) are dominated by commercial and entrepreneurial interests rather than by the experiences of doctors or patients. With the exception of Susannah Fox from the US Department of Health and Human Services, spokespeople from government agencies appear to have little influence in these discussions. This is borne out by the list of top-most influential brands, which are again dominated by commercial enterprises (although the NHS England is included towards the bottom of the top 25).

These data raise some interesting questions for a digital health sociologist. How do voices other than commercial enterprises get heard on Twitter? What makes some conditions or diseases more talked about on Twitter than others? For example, why is breast cancer so prominent — is it because there are far more patient advocates and organisations for patients devoting attention to discussing this , or is it because it is a common form of cancer, or are other factors involved? Why do some practising doctors and medical specialists decide to get involved in Twitter discussions on a particular condition or a digital health technology? How do all the different actors engage with each other –- who pays attention to whom? What kinds of networks are formed between actors from the different groups who are advocates or healthcare providers or developers?

Self-tracking citizenship

An excerpt from Chapter 5 of my new book  The Quantified Self: A Sociology of Self-Tracking.

Nafus and Sherman (2014: 1785) contend that self-tracking is an alternative data practice that is a form of soft resistance to algorithmic authority and to the harvesting of individuals’ personal data. They argue that self-tracking is nothing less than ‘a profoundly different way of knowing what data is, why it is important, who gets to interpret it [sic], and to what ends’. However the issue of gaining access to one’s data remains crucial to questions of data control and use. While a small minority of technically proficient self-trackers are able to devise their own digital technologies for self-tracking and thus exert full control over their personal information, the vast majority must rely on the commercialised products that are available and therefore lose control over where their data are stored and who is able to gain access.

For people who have chronic health conditions, for example, access to their data can be a crucial issue. A debate is continuing over the data that are collected by continuous blood glucose monitoring and whether the patients should have ready access to these data or only their doctors. As one person with diabetes contends on his blog, older self-care blood glucose-monitoring devices produce data that patients can view and act on immediately. Why should the information generated by the newer digitised continuous blood glucose monitors be available only to doctors, who review it some time later, when patients could benefit from seeing their data in real time? A similar issue arises in relation to the information that is collected on heart patients’ defibrillator implants. The data that are conveyed wirelessly to patients’ healthcare professionals cannot be easily accessed by the patients themselves. In jurisdictions such as the United States, the device developers are legally prohibited from allowing patients access to their data (see here).

There is recent evidence that the Quantified Self movement is becoming more interested in facilitating access to personal data for purposes beyond those of individuals. In a post on the Quantified Self website entitled ‘Access matters’, Gary Wolf comments that self-trackers have no legal access to their own data, which they may have collected for years. Nor is there an informal ethical consensus that supports developers in opening their archives to the people who have contributed their information. Wolf and others associated with the Quantified Self movement have begun to campaign for self-trackers to achieve greater access to the personal data that are presently sequestered in the cloud computing archives of developers. They argue for an approach that leads to the aggregation of self-tracked data in ways that will benefit other people than individual self-trackers themselves.

Some Quantified Self movement-affiliated groups have begun to experiment with ways in which self-tracking can be used for community participation and development. Members of the St Louis Quantified Self meeting group, for example, have worked on developing a context-specific app that allows people to input their moods and identify how certain spatial locations within a community affect emotional responses. They are also developing a Personal Environment Tracker that would allow St Louis citizens to monitor their own environmental impact and that of the community in which they live.

The Quantified Self Lab, the technical arm of the Quantified Self mvement, has also announced that it is becoming involved with citizen science initiatives in collaboration with the US Environmental Protection Agency (see here). It has now joined with the Robert Wood Johnson Foundation, an American philanthropic organisation focused on health issues, to work on improving people’s access to their personal data. Both groups are also collaborating with other partners on the Open Humans Network, which is aimed at facilitating the sharing of people’s details about their health and medical statuses as part of a participatory research initiative. Participants who join in this initiative are asked to upload the data that they have collected on themselves through self-tracking devices as well as any other digitised information about their bodies that they are able to offer for use in research studies. Part of the model that the Open Humans Network has adopted is that researchers agree to return to the participants themselves any new data that emerge from projects that use these participants’ information, and participants decide which of their data they allow others to access.

Beyond the Quantified Self movement, a number of initiatives have developed that incorporate the aggregation of self-tracked data with those of others, as part of projects designed to benefit both the individuals who have collected the data and the broader community. Citizen science, environmental activism, healthy cities and community development projects are examples of these types of communal self-tracking endeavours. These initiatives, sometimes referred to as ‘citizen sensing’ (Gabrys, 2014), are a form of crowdsourcing. They may involve the use of data that individuals collect on their local environs, such as air quality, traffic levels or crime rates, as well as on their own health indicators – or a combination of both. These data may be used in various ways. Sometimes they are simply part of collective projects undertaken at the behest of local agencies, but they may also be used in political efforts to challenge governmental policy and agitate for improved services or planning. The impetus may come from grassroots organisations or from governmental organisations; the latter construe it as a top-down initiative or as an encouragement towards community development.

Self-tracked data here become represented as a tool for promoting personal health and wellbeing at the same time as community and environmental development and sustainability. As these initiatives suggest, part of the ethical practice of self-tracking, at least for some practitioners, may involve the notion of contributing to a wider good as well as collecting data for one’s own purposes. Access to large data sets – rendering these data sets more ‘open’ and accessible to members of the public – becomes a mode of citizenship that is distributed between self, community and physical environment. This idea extends the entrepreneurial and responsible citizen ideal by incorporating expectations that people should not only collect their own, personal information for purposes of self-optimisation but should also contribute it to tailored, aggregated big data that will benefit many others, in a form of personal data philanthropy: self-tracking citizenship, in other words.

References

Gabrys, J. (2014) Programming environments: environmentality and citizen sensing in the smart city. Environment and Planning D: Society and Space, 32 (1), 30-48.

Nafus, D. and Sherman, J. (2014) This one does not go up to 11: the Quantified Self movement as an alternative big data practice. International Journal of Communication, 8 1785-1794.

 

 

 

 

 

Self-tracking practices as knowledge technologies

An edited excerpt from the concluding chapter of my book The Quantified Self: A Sociology of Self-Tracking.

As I have remarked in this book’s chapters, via the mainstream self-tracking devices and software that are available, certain aspects of selfhood and embodiment are selected for monitoring while a plethora of others are inevitably left out, ignored, or not even considered in the first place. Those aspects that are selected become more visible, while others are obscured or neglected through this process. The technologies themselves, including the mobile, wearable and ‘anti-wearable’ sensor-embedded objects and the software that animate them, tend to be the product of a narrow demographic of designers: white, well-paid, heterosexual men living in the Global North. In consequence, the tacit assumptions and norms that underpin the design and affordances of self-tracking technologies are shaped by these people’s decisions, preferences and values. Thus, for example, devices such as Apple Watch initially failed to include a menstrual cycle tracker as part of its built-in features (Eveleth, 2014); sexuality self-tracking apps focus on male sexual performance and competitive displays of prowess (Lupton, 2015); apps that use westernised concepts and images of health and the human body are inappropriate for Aboriginal people living in remote areas of Australia (Christie and Verran, 2014). How people from outside this demographic might engage or not with these technologies and how technologies might be better designed to acknowledge the diversity of socioeconomic advantage, cultures and sexual identities are subjects rarely pondered upon in the world of technology design …

At the same time as self-tracking practices are reductive and selective, they are also productive. They bring into being new knowledges, assemblages, subjectivities and forms of embodiment and social relations. In Chapter 2 I referred to the four types of technology identified by Foucault, which work together to produce knowledges on humans. Acts of reflexive self-monitoring involve all four of these knowledge technologies. Via prosumption, self-trackers generate data on themselves (technologies of production); they manipulate and communicate the symbols, images, discourses and ideas related to their own data and the devices that generate these data (technologies of sign systems); they are involved in strategies that are designed to assist them in participating in certain forms of conduct for specific ends (technologies of power); and all of these practices are overtly and deliberately directed at performing, presenting and improving the self (technologies of the self).

What is particularly intriguing about this expertise is that it both operates at the level of the ‘nonexpert’ (the self-tracker), where it is configured, and is inextricably interbound into the digital data economy and the forms of government regulation of the body politic. The authority of the knowledgeable expert on human life is dispersed among members of the lay public to a greater extent than ever before. However, the shared nature of this authority and expertise also undermines the power that self-trackers possess over their own information. Reflexive self-monitors are able to generate their own truth claims about trackers’ own bodies/selves, but these trackers are increasingly unable to control how these truth claims are used by other actors or what the potential ramifications for their own life chances and opportunities are once these data come under the control of others.