Cycling self-tracking and data sense

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This week I am delivering a paper at the joint 4S (Society for the Social Studies of Science) and EASST (European Association for the Study of Science and Technology) conference in Barcelona. The paper is in the track ‘Everyday analytics: the politics and practices of self-monitoring’. In the paper I discuss elements of my Living Digital Data research program and describe one of my research projects, which investigates the self-tracking practices of commuting cyclists who use digital devices to monitor their rides.

The research team (myself and Christine Heyes Labond from the University of Canberra and Sarah Pink and Shanti Sumartojo from RMIT Melbourne) conducted empirical research with 18 participants living in Canberra and Melbourne about their self-tracking practices. We used a combination of interviews, enactments of people getting ready for and completing their cycling trips and footage of the cycling trips themselves taken from the perspective of the cyclists (using a GoPro mini action camera mounted on their helmet).

Here are the slides from the paper, which outlines details of the project and some of the findings. Data sense 4S Barcelona

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.

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.

 

 

 

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.

 

Interesting HCI research on self-tracking: a reading list

In a recent blog post, I published a reading list of critical social research into self-tracking. And in another recent post, I discussed what I saw as the intersections of digital sociology and human-computer interaction (HCI) research. I argued that researchers in each approach should pay attention to what the others are doing, as there are many shared interests.

In this post, I present a reading list of what I (as sociologist) have chosen to designate as ‘interesting’ HCI research on the same phenomenon. This is based on what I consider ‘interesting’ – studies that go beyond design or technical features of self-tracking technologies to address how people use them and incorporate the data into their everyday lives.

There is a wealth of HCI research on self-tracking. HCI researchers have published earlier and more often on self-tracking compared to sociologists and other social researchers. This is largely due to their publishing conventions, in which peer-reviewed conference papers have the status of journal articles, and allow people to publish their research much more quickly. Probably because they are located within the world of digital technology design, HCI researchers devoted their attention much earlier than social scientists to what was initially (and sometimes still) called ‘lifelogging’ and how digital devices were used by practitioners.

Some of the research below takes an explicitly critical or reflective approach to self-tracking – although I have found that this is quite rare in HCI, where the ‘persuasive computing’ approach dominates in research on this topic. A few articles report on speculative design approaches or ways of materialising data that are innovative. Others simply offer some interesting material on how and why people are engaging in self-tracking.

Barrass S. (2016) Diagnosing blood pressure with Acoustic Sonification singing bowls. International Journal of Human-Computer Studies 85: 68-71.

Choe EK, Lee NB, Lee B, Pratt W and Kientz JA. (2014) Understanding quantified-selfers’ practices in collecting and exploring personal data. Proceedings of the 32nd Annual ACM Conference on Human Factors in Computing Systems (CHI ’14). Toronto: ACM Press, 1143-1152.

Choe EK, Lee NB and Schraefel M. (2015) Revealing visualization insights from Quantified-Selfers’ personal data presentations. Computer Graphics and Applications 35: 28-37.

Cuttone A, Petersen MK and Larsen JE. (2014) Four data visualization heuristics to facilitate reflection in personal informatics. Universal Access in Human-Computer Interaction. Design for All and Accessibility Practice. Heraklion: Springer, 541-552.

Doherty AR, Caprani N, Conaire CÓ, Kalnikaite V, Gurrin C, Smeaton AF and O’Connor NE. (2011) Passively recognising human activities through lifelogging. Computers in Human Behavior 27: 1948-1958.

Doherty AR, Pauly-Takacs K, Caprani N, Gurrin C, Moulin CJA, O’Connor NE and Smeaton AF. (2012) Experiences of aiding autobiographical memory using the SenseCam. Human–Computer Interaction 27: 151-174.

Elsden C, Kirk D, Selby M and Speed C. (2015) Beyond personal informatics: designing for experiences with data. Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing System (CHI ’15). Seoul: ACM Press, 2341-2344.

Elsden C, Kirk DS and Durrant AC. (2015) A quantified past: toward design for remembering with personal informatics. Human–Computer Interaction online first: 1-40.

Epstein D, Cordeiro F, Bales E, Fogarty J and Munson S. (2014) Taming data complexity in lifelogs: exploring visual cuts of personal informatics data. Proceedings of the 2014 Conference on Designing Interactive Systems (DIS ’14). Vancouver: ACM Press, 667-676.

Epstein DA, Ping A, Fogarty J and Munson SA. (2015) A lived informatics model of personal informatics. Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing (UbiComp ’15). Osaka: ACM Press, 731-742.

Fan C, Forlizzi J and Dey A. (2012) A spark of activity: exploring informative art as visualization for physical activity. Proceedings of the 2012 ACM Conference on Ubiquitous Computing (Ubicomp ’12). Pittsburgh: ACM Press, 81-84.

Gaver WW, Bowers J, Boehner K, Boucher A, Cameron DWT, Hauenstein M, Jarvis N and Pennington S. (2013) Indoor weather stations: investigating a ludic approach to environmental HCI through batch prototyping. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’13). Paris: ACM Press, 3451-3460.

Grönvall E and Verdezoto N. (2013) Beyond self-monitoring: Understanding non-functional aspects of home-based healthcare technology. Proceedings of the ACM International Joint Conference on Pervasive and Ubiquitous Computing (UbiComp ’13). Zurich: ACM Press, 587-596.

Hoyle R, Templeman R, Anthony D, Crandall D and Kapadia A. (2015) Sensitive lifelogs: a privacy analysis of photos from wearable cameras. Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (CHI’ 15). ACM Press, 1645-1648.

Huang D, Tory M, Aseniero BA, Bartram L, Bateman S, Carpendale S, Tang A and Woodbury R. (2015) Personal visualization and personal visual analytics. Visualization and Computer Graphics 21: 420-433.

Kalnikaite V, Sellen A, Whittaker S and Kirk D. (2010) Now let me see where I was: understanding how lifelogs mediate memory. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’10). Atlanta: ACM Press, 2045-2054.

Khot R, Hjorth L and Mueller FF. (2014) Understanding physical activity through 3D printed material artifacts. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’14). Toronto: ACM Press, 3835-3844.

Khot R, Lee J, Munz H, Aggarwal D and Mueller F. (2014) Tastybeats: making mocktails with heartbeats. Designing Interactive Futures. Vancouver: ACM Press, 467-470.

Khot RA, Pennings R and Mueller FF. (2015) EdiPulse: supporting physical activity with chocolate printed messages. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’15). Seoul: ACM Press, 1391-1396.

Khovanskaya V, Baumer EP, Cosley D, Voida S and Gay G. (2013) Everybody knows what you’re doing: a critical design approach to personal informatics. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ’13). Paris: ACM Press, 3403-3412.

Lawson S, Kirman B, Linehan C, Feltwell T and Hopkins L. (2015) Problematising upstream technology through speculative design: the case of quantified cats and dogs. Proceedings of the SIGCHI Conference on Human Factors in Computer Systems (CHI ’15). ACM Press, 2663-2672.

Lazar A, Koehler C, Tanenbaum J and Nguyen DH. (2015) Why we use and abandon smart devices. Proceedings of the ACM International Joint Conference on Pervasive and Ubiquitous Computing (UbiComp ’15). Osaka: ACM Press, 635-646.

Lee M-H, Cha S and Nam T-J. (2015) Patina engraver: visualizing activity logs as patina in fashionable trackers. Proceedings of the SIGCHI Conference on Human Factors in Computing System (CHI ’15). Seoul: ACM Press, 1173-1182.

Li I, Dey AK and Forlizzi J. (2011) Understanding my data, myself: supporting self-reflection with ubicomp technologies. Proceedings of the International Conference on Ubiquitous Computing (Ubicomp ’11). Beijing: ACM, 405-414.

Liu W, Ploderer B and Hoang T. (2015) In bed with technology: challenges and opportunities for sleep tracking. Proceedings of the Annual Meeting of the Australian Special Interest Group for Computer Human Interaction (OzCHI ’15). ACM Press, 142-151.

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My new book: The Quantified Self

My new book The Quantified Self: A Sociology of Self-Tracking is due out with Polity Press this April. The publishers are offering a 20% discount for six months (from 18 January 2016 to 31 July 2016) if it is ordered via their website. Please use the code PY703 when you order to receive the discount.

Here is a PDF of the Introduction: Lupton 2016 Introduction to The Quantified Self.

Table of Contents

Acknowledgements

Introduction

1          ‘Know Thyself’: Self-tracking Practices and Technologies

2          ‘New Hybrid Beings’: Theoretical Perspectives

3          ‘An Optimal Human Being’: the Body and Self in Self-Tracking Cultures

4          ‘You are Your Data’: Personal Data Meanings, Practices and Materialisations

5          ‘Data’s Capacity for Betrayal’: Personal Data Politics

Conclusion

References

Index

 

POLITY-Lupton-Quantified Self Visuals-AUG24-3 (1)

 

Towards a new mode of self-tracking

In a conference paper and my forthcoming book The Quantified Self: A Sociology of Self-Tracking Cultures, I identify five modes of self-tracking. What I call ‘private self-tracking’ is undertaken for voluntary and personal reasons that are self-initiated. ‘Pushed self-tracking’ involves encouragement for people to monitor themselves from other agencies, while the mode of ‘communal self-tracking’ relies on people sharing their personal information with others. ‘Imposed self-tracking’ involves moving from encouragement to requiring people to collect or engage with data about themselves, so that they may have little choice in doing so. The ‘exploited self-tracking’ mode represents the ways in which personal data may be used by other actors and agencies for their own purposes, either overtly or covertly.

Since writing the initial conference paper, developing these ideas in my book and also for a journal article based on the paper, I have added some thoughts about the possibilities for forms of self-tracking that go beyond these modes. As I argue, self-tracking conforms to a conservative political agenda that represents citizens as automated/autonomous subjects, ideally engaging in self-responsibilised practices of monitoring and life optimisation and emitting valuable ‘data exhausts’ for repurposing by other actors and agencies.

As yet, there has been little discussion of the ways in which self-tracking may be used for resistant or strategic political interventions – as means to challenge accepted norms and assumptions about selves and bodies rather than conforming to these norms and assumptions. Few commentators have drawn attention to how self-tracking highlights certain forms of information about specific kinds of individuals or social groups while it neglects or ignores others, and how idealised citizen subjects are configured via dominant self-tracking cultures while those who fail to meet these ideals are stigmatised or disciplined.

Nascent moves towards a more political use of self-tracking are evident in some citizen sensing initiatives, when they are used to expose or challenge assumptions about geographical areas, the social determinants of ill-health, the environment and living conditions in the effort to draw attention towards social inequalities, government neglect or environmental mismanagement.

There is ample further scope for alternative approaches to self-tracking as a form of knowledge production that seek to identify, record and highlight details of socioeconomic disadvantage or social stigma rather than simply perpetuating them, or to generate knowledge of others rather than being directed at serving the solipsism of self-knowledge. Resistant self-tracking efforts may serve to make visible forms of power relations, injustice and inequalities that are currently hidden from view. It is here that a new mode of self-tracking may develop. The possibilities for a new form of data politics that takes up these more critical and challenging practices are intriguing.

Who owns your personal health and medical data?

09/01/15 -- A moment during day 1 of the 2-day international Healthcare and Social Media Summit in Brisbane, Australia on September 1, 2015. Mayo Clinic partnered with the Australian Private Hospitals Association (APHA), a Mayo Clinic Social Media Health Network member to bring this first of it's kind summit to Queensland's Brisbane Convention & Exhibition Centre. (Photo by Jason Pratt / Mayo Clinic)

Presenting my talk at the Mayo Clinic Social Media and Healthcare Summit (Photo by Jason Pratt / Mayo Clinic)

Tomorrow I am speaking on a panel at the Mayo Clinic Healthcare and Social Media Summit on the topic of ‘Who owns your big data?’. I am the only academic among the panel members, who comprise of a former president of the Australian Medical Association, the CEO of the Consumers Health Forum, the Executive Director of a private hospital organisation and the Chief Executive of the Medical Technology Association of Australia. The Summit itself is directed at healthcare providers, seeking to demonstrate how they may use social media to publicise their organisations and promote health among their clients.

As a sociologist, my perspective on the use of social media in healthcare is inevitably directed at troubling the taken-for-granted assumptions that underpin the jargon of ‘disruption’, ‘catalysing’, ‘leveraging’ and ‘acceleration’ that tend to recur in digital health discourses and practices. When I discuss the big data phenomenon, I evoke the ‘13 Ps of big data‘ which recognise their social and cultural assumptions and uses.

When I speak at the Summit, I will note that the first issue to consider is for whom and by whom personal health and medical data are collected. Who decides whether personal digital data should be generated and collected? Who has control over these decisions? What are the power relations and differentials that are involved? This often very intimate information is generated in many different ways – via routine online transactions (e.g. Googling medical symptoms, purchasing products on websites) or more deliberately as part of people’s contributions to social media platforms (such as PatientsLikeMe or Facebook patient support pages) or as part of self-tracking or patient self-care endeavours or workplace wellness programs. The extent to which the generation of such information is voluntary, pushed, coerced or exploited, or indeed, even covert, conducted without the individual’s knowledge or consent, varies in each case. Many self-trackers collect biometric data on themselves for their private purposes. In contrast, patients who are sent home with self-care regimes may do so reluctantly. In some situations, very little choice is offered people: such as school students who are told to wearing self-tracking devices during physical education lessons or employees who work in a culture in which monitoring their health and fitness is expected of them or who may be confronted with financial penalties if they refuse.

Then we need to think about what happens to personal digital data once they are generated. Jotting down details of one’s health in a paper journal or sharing information with a doctor that is maintained in a folder in a filing cabinet in the doctor’s surgery can be kept private and secure. In this era of using digital tools to generate and archive such information, this privacy and security can no longer be guaranteed. Once any kind of personal data are collected and transmitted to the computing cloud, the person who generated the data loses control of it. These details become big data, part of the digital data economy and available to any number of second or third parties for repurposing: data mining companies, marketers, health insurance, healthcare and medical device companies, hackers, researchers, the internet empires themselves and even national security agencies, as Edward Snowden’s revelations demonstrated.

Even the large institutions that are trusted by patients for offering reliable and credible health and medical information online (such as the Mayo Clinic itself, which ranks among the top most popular health websites with 30 million unique estimated monthly visitors) may inadvertently supply personal details of those who use their websites to third parties. One recent study found that nine out of ten visits to health or medical websites result in data being leaked to third parties, including companies such as Google and Facebook, online advertisers and data brokers because the websites use third party analytic tools that automatically send information to the developers about what pages people are visiting. This information can then be used to construct risk profiles on users that may shut them out of insurance, credit or job opportunities. Data security breaches are common in healthcare organisations, and cyber criminals are very interested in stealing personal medical details from such organisations’ archives. This information is valuable as it can be sold for profit or used to create fake IDs to purchase medical equipment or drugs or fraudulent health insurance claims.

In short, the answer to the question ‘Who owns your personal health and medical data?’ is generally no longer individuals themselves.

My research and that of others who are investigating people’s responses to big data and the scandals that have erupted around data security and privacy are finding that concepts of privacy and notions of data ownership are beginning to change in response. People are becoming aware of how their personal data may be accessed, legally or illegally, by a plethora of actors and agencies and exploited for commercial profit. Major digital entrepreneurs, such as Apple CEO Tim Cook, are in turn responding to the public’s concern about the privacy and security of their personal information. Healthcare organisations and medical providers need to recognise these concerns and manage their data collection initiatives ethically, openly and responsibly.