4 Digital Health Technologies and Digital Data: New Ways of Monitoring, Measuring and Commodifying Human Bodies

4 Digital health technologies and digital
data: new ways of monitoring, measuring

and commodifying human bodies
Deborah Lupton
INTRODUCTION
Since the early years of this century, digital technologies have become
ubiquitous and pervasive. Mobile digital devices that can connect to the
Internet from almost any location, such as smartphones, tablet computers
and iPods, have emerged onto the market and become widely adopted.
Such devices allow their users to be potentially always digitally connected
and reachable in some form. So too, over the past decade, social media
platforms have emerged, allowing for the creation of content and the
sharing of personal data. A further range of sensor-based technologies
that can track people’s location, bodily movements and a range of other
data about their practices, preferences and habits are now used for per-
sonal, governmental and commercial purposes. The digital data generated
by all of these technologies are aggregated into massive datasets, now
referred to as ‘big data’.
The implications of these new technologies for healthcare and public
health are profound. Frequent statements are now made in the medical
and public health literature about an imminent revolution in healthcare,
preventive medicine and public health driven by the use of digital devices
and associated apps, websites and platforms. Predictions have prolifer-
ated about how these technologies will come to dominate in medical and
public health as a means of providing information, delivering patient care,
bestowing responsibility upon lay people to manage their health and col-
lecting large masses of health-related data on populations. There has been
particular enthusiasm expressed about the possibilities for digital health in
rural and remote regions and in developing countries, where good access
to healthcare is often lacking. Digital health technologies are represented
as offering an ideal, cost-effective solution to the ‘wicked problems’ of
healthcare delivery and encouraging people to change their behaviour in
the effort to avoid ill health.
The mobile digital devices and related software and the websites and
platforms to which they connect offer not only ready access to medical
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86 Research handbook on digital transformations
and health information on the Internet but also new ways of monitoring,
measuring and visualizing the human body and sharing personal informa-
tion and experiences with others. Many such technologies are now explic-
itly designed for medical and health purposes, contributing to the recent
emergence of the digital health phenomenon. ‘Digital health’ is a term
that is used to encompass the wide range of technologies used for health-
care, health informatics, health education, health promotion and public
health purposes. It incorporates other terms such as ‘eHealth’, ‘mHealth’,
‘connected health’, ‘pervasive health’ and ‘Health 2.0’.
Most discussion of digital health technologies in the medical and public
health literature and the popular media takes a largely instrumental
approach, focusing on the apparent benefits, in terms of financial savings
and improved healthcare and health promotion, these technologies offer.
However, it is important to adopt a more critical approach when assessing
the impact and implications of digital health technologies and the data they
produce. Digital health technologies potentially generate different ways of
thinking about, practising and experiencing medicine, healthcare and public
health. From a perspective informed by critical social and cultural theory,
these changes have the potential to challenge entrenched conceptualizations
and experiences of illness, health, disease and medical care and practice.
A critical perspective focuses attention on the silences and omissions
that are evident in mainstream discussions of the ‘disruptive’ nature of
digital health technologies, including their political dimensions. It views
digital health technologies not as neutral, value-free devices and software,
but as sociocultural artefacts invested with tacit assumptions and cultural
meanings. This approach is articulated in a field of research that I call
‘critical digital health studies’, and which I contend is vital to identify
social, political, privacy and ethical factors, including the ramifications
of digital health technologies for social groups who are already socio-
economically disadvantaged or who live with disabilities or chronic poor
health (see, for example, Lupton 2014a, 2014b, 2014d, 2015a, 2016a).
Theoretically, this approach tends to draw on a political economy
critique that focuses on social inequalities and social justice issues,
Foucauldian theory (on governmentality, biopolitics, surveillance and
practices of the self) and a sociomaterial perspective from science and tech-
nology studies. Exponents of these perspectives argue that digital (and
other) technologies bestow meaning and subjectivity upon their users, just
as users shape the technologies and give them meaning as they incorporate
them into their everyday practices.
The critical digital studies approach therefore acknowledges the com-
bination of the material and non- material, the human and the non-
human, the fleshly and the ideational in ever-changing configurations. It


Digital health technologies and digital data 87
r ecognizes the dynamic nature of people’s interactions with technologies

in a world in which the digital is increasingly part of everyday lives, social
relationships and concepts of subjectivity and embodiment (Lupton,
2015b). The increasing power wielded by digital media corporations such
as Facebook, Amazon, Google, Microsoft and Apple over digital tech-
nologies and the data they generate requires acknowledgement, as does
the blurring between voluntary and imposed self-monitoring and use of
personal health and medical data that is taking place.
There are many dimensions of the transformations wrought by digital
health that can be discussed, particularly given the wide range of technolo-
gies and practices that this field incorporates. In this chapter, following an
overview of the range of digital health technologies currently in use, I focus
on the digital data generated from these technologies, discussing the impli-
cations for the digital knowledge economy, data security and privacy, civil
rights and social inequalities. As I will demonstrate, the progressive digi-
tization of health and medical-related data has led to new ways not only
of monitoring and measuring aspects of human embodiment, health and
illness, but also of using these data for commercial, managerial, research
and governmental purposes.
DIGITAL HEALTH TECHNOLOGIES: AN OVERVIEW
Like most other aspects of everyday life and social relations, the domains
of medicine, healthcare and public health have experienced changes in
the wake of digital transformations. Digital technologies are in continual
use as part of healthcare workplaces. Telemedicine and telehealth offer
patients opportunities to interact with healthcare providers via wireless
technologies and for those with chronic health conditions, to engage in
self-care routines at home. Hospitals and other healthcare organizations
have developed online systems for such processes as patient booking, risk
assessment, patient records, triage and decision-making. Some medical
practitioners employ digital technologies as part of their training and
routine practice. Medical and patient education are facilitated via apps
and other digital technologies, such as virtual world environments. 3D
printing using digital data from scanning technologies such as ultra-
sounds, magnetic resonance imaging and computer tomography is also
resulting in some changes in medical education, practice and patient com-
munication. 3D printers can be used to fabricate body part prosthetics and
living tissue for experimentation for new drug therapies. They generate
patient-specific anatomical replicas for use by surgeons when planning
surgery and explaining their treatment to patients.


Social media platforms are regularly used to create interest and support
groups related to health and medical topics and conditions and to provide
information. Health promoters employ such strategies as mobile phone
text and Twitter messages and customized social media sites such as
Facebook pages to disseminate health- related messages. Social media
platforms have also facilitated the voluntary sharing of experiences of ill
health and medical treatments with others. This takes place not only on
more general sites such as Facebook, Twitter, YouTube and Instagram
but also on tailored platforms that have been developed specifically for
patients and carers to interact with each other, including PatientsLikeMe,
CarePages, CureTogether and Smart Patients.
Digital media platforms also provide the opportunity for patients to
find doctors and to rank and rate them. Platforms like ZocDoc (with asso-
ciated apps for mobile devices) help patients find nearby doctors and den-
tists and make appointments online, as well as read reviews of doctors by
other users. The HealthTap website provides information to patients and
connects them with healthcare providers. Patients can ask questions about
health and medical issues that are answered by doctors, and to search for
doctors in their area and make appointments online. The Patient Opinion
website, versions of which have been formulated for both the UK and
Australia, provides a forum for patients to comment on the healthcare
they have received from the state-funded systems in those countries.
Over 160 000 health and medical-related apps for mobile digital devices
have been developed for commercial use. There is also a range of other
digital products currently on the market that can be worn on the body
for self-tracking biometric data. Such body functions, sensations and
indicators as blood glucose, body weight and body mass index, physical
activity, energy expended, mood, body temperature, breathing rate, blood
chemistry readings and brain activity can all be monitored using port-
able wearable and internal sensors that have been placed in wristbands or
headbands, woven into clothing, laminated onto ultra-thin skin interfaces
or even inserted into ingestible tablets that can monitor the body from
within. Gaming technologies (or ‘exergames’) such as the virtual world app
‘Zombies Run!’ and consoles such as Wii Fit and Xbox Kinect have been
designed to promote health and fitness in their users. Sensor-based envi-
ronments (or ‘smart homes’) have also been developed for the monitoring
and care of elderly people in their homes as part of assisted living arrange-
ments. Citizen sensing or citizen science initiatives are also part of digital
health. These involve members of the public using digital devices, often
equipped with sensors, to monitor aspects of their environment in the effort
to aggregate data that can inform environmental or public health policy.
Many corporate organizations and government agencies have entered


the digital health market. In 2014 Google, Apple, Samsung and Microsoft
all announced plans for digital health initiatives. The American giant
retailer chain Walmart now provides interactive, self-service health kiosks,
encouraging shoppers to check their eyesight, weight, body mass index and
blood pressure and access health-related information (as well as showing
advertisements for related products stocked by Walmart which can be
targeted to users based on their responses). Other US providers are offer-
ing cubicles where lay people pay a set sum to engage in a video consulta-
tion with a doctor. The huge American pharmacy chain, Walgreens, has
been developing initiatives that involve offering customers remote access
to doctors via digital devices. Health and life insurance companies in the
US and elsewhere are also directly offering consumers the opportunity to
use self-tracking devices for health and fitness. Self-tracking using digital
devices is also being introduced into some workplaces as part of corporate
‘wellness programmes’, particularly in the US.
The American government’s Affordable Care Act encourages such
programmes, as it focuses on keeping patients out of hospitals and sur-
geries in favour of self-care and preventive medicine (Malykhina, 2013).
State-funded healthcare systems are also expanding their digital technol-
ogy offerings, particularly telemedicine and telehealth. In the UK, for
example, the National Health System (NHS) has developed an initiative to
fund libraries, community centres and pubs to act as ‘digital health hubs’.
These are designed to provide training and support for people to learn
about accessing health and medical information online and use websites
such as NHS Choices, which offers free health-related apps to download
and information and advice on a range of conditions, online patient
support communities and healthcare.
Big digital datasets about people’s health and medical information are
employed for many purposes. Search engine queries and discussions of
illnesses on social media sites, for example, are used to track disease out-
breaks. Digital tools such as HealthMap have been developed; HealthMap
can search the web for disease reports from online news reports, blogs,
social media platforms and official reports and can represent disease out-
breaks visually on digital maps. It includes an app users can download
to their mobile digital devices so that they can identify what region is
experiencing an outbreak of infectious disease or report cases which are
then followed up. Pharmaceutical companies use data harvesting from
social media and patient support platforms to determine how their drugs
are being used and talked about. Clinical trials are run using volunteers
who are members of platforms such as PatientsLikeMe, and medical
researchers are accessing big datasets to identify adverse drug reactions
and successful medical treatments.


Big data about health are also used for predictive analytic purposes.
Hospitals are beginning to make use of diverse digital datasets about
individuals, such as their patient record, body metrics and medications
and laboratory results, to make predictions about future outcomes or
disease risks. Other agencies, such as retailers offering customer loyalty
programmes, are encouraging their clients to allow them access not only
to purchasing behaviours in supermarkets and pharmacies but also self-
tracked health and fitness data, allowing them to combine various forms
of data to make inferences about their customers’ health-related habits
and preferences.
THE DIGITAL DATA ECONOMY AND LIVELY

DATA
Digital health technologies are part of a trajectory of representing and

treating human bodies as repositories of observable and predictable infor-
mation that has occurred in Western biomedicine since the eighteenth
century. With the advent of the industrial revolution, bodies became con-
ceptualized as machines. Once computer technologies were introduced and
became widespread, metaphors often represented the body as a complex
digitized system of information processing (Haraway, 1985; Nettleton,
Burrows, O’Malley, and Watt, 2004; Lupton, 2012a, 2013a). These ways
of conceptualizing the human body and its workings were reflected in
medical practice. ‘Mechanical medicine’ became replaced by ‘information
medicine’. The details that computerized technologies could elicit about
the body and its ills became trusted over other forms of monitoring and
visualizing the body because they were viewed as scientific and therefore as
more accurate than other forms of information (Nettleton and Burrows,
2003; Nettleton, Burrows, Malley, and Watt, 2004; Clarke, Shim, Mamo,
Fosket, and Fishman, 2010; Prentice, 2013).
More recent versions of information medicine that incorporate the
newest forms of digital technologies work to represent the body as a data-
emitting object, constantly generating streams of data that have become
increasingly detailed (Lupton, 2013a, 2016b, in press). The collections of
digital data generated on individuals produce customized representations
of specific aspects of digital use for each user. A multitude of these digital
data assemblages are produced from the various sites, devices and spaces
with which individuals interact daily. As objects, built environments and
human bodies become equipped with sensor- based technologies, the
potential to generate ever-greater masses of detail about behaviours, activ-
ities and biometrics has expanded. Digital devices are learning more about


humans as they construct digital data assemblages in endless intertwinings

and new configurations of data. Data are exchanged between objects and
humans in networks of data generation and sharing, offering myriad and
inexhaustible potentialities of data assemblages. Humans become por-
trayed as yet one more node in the Internet of things for generating and
exchanging data.
The digital technologies described above continually generate data
on health and medical matters that are viewed as offering opportuni-
ties for governments and commercial entities to obtain detailed insights
into the use of healthcare, the effectiveness of medical therapies, patient
behaviour and patterns of illness and disease (see, for example, Swan,
2012; Hay, George, Moyes, and Brownstein, 2013; Murdoch and Detsky,
2013). Here again it is assumed in these arguments that big digital sets
offer superior forms of knowledge compared with other means of elicit-
ing information, as they are viewed as more ‘neutral’ and ‘accurate’ than
other forms of knowledge. As such, discussions of these data conform to
broader accounts of the apparent value of ‘big data’ (see, for example,
Manyika et al., 2011; Mayer-Schonberger and Cukier, 2013). Part of the
valorizing of big data is the notion that bringing diverse datasets together
will enhance understanding and contribute to knowledge. In an article on
the use of big data in medicine and public health, for example, the authors
outline ways in which digital datasets may be combined productively to
produce insights: ‘do grocery shopping patterns obtained from stores in
various areas predict rates of obesity and type 2 diabetes in public health
databases? Does level of exercise recorded by home monitoring devices
correlate with response rates of cholesterol-lowering drugs, as measured
by continued refills at the pharmacy?’ (Weber, Mandl, and Kohane, 2014,
p. 2479). The authors provide a figure in the article that demonstrates
how they think data from many different sources can be linked to provide
information on an individual for healthcare purposes. These include
not only specific health-and illness-related information but also police
records, social media networks, status updates and posts, genetic testing,
fitness club membership details, credit card purchases and climate and
weather data.
From a critical perspective, however, many questions are raised by
the ways in which second and third parties access and use the often very
personal information about people’s bodies and habits collected as part
of digital health practices. The very concepts of digital data and big data
require sustained critique. Sociologists and other social and cultural schol-
ars have recently begun to point out the ways in which digital datasets are
configured and the political purposes to which they are put. They have
contended that digital data are not the neutral, objective facts that they


are often represented to be in popular discourses. Rather they are socio-

cultural enactments, the products of specific interactions between humans
and non-humans. Like any other forms of knowledge they are social
constructions: political, messy and not only reflective but also constitu-
tive of subjects, identities and communities (Boyd and Crawford, 2012;
Manovich, 2012; Ruppert, Law, and Savage, 2013; Kitchin and Lauriault,
2014; Lupton, 2015b). So too, the algorithms that collect and manage
digital data contribute to certain ways of categorizing and producing
subjects and bodies (Cheney-Lippold, 2011; Totaro and Ninno, 2014).
Like many other forms of digital data, medical and health data have a
vitality and social life of their own, circulating across and between a mul-
titude of sites (Lash, 2006; Beer, 2013; Lyon and Bauman, 2013). Shifting
forms of selfhood are configured via these digital data assemblages,
depending on the context in and purpose for which they are assembled.
Personal data assemblages are never stable or contained. They represent
a ‘snap-shot’ of a particular moment in time and a particular rationale
of data practice. The data assemblages are always mutable and dynamic,
responsive to new inputs and interpretations (Lyon and Bauman, 2013;
Kitchin and Lauriault, 2014; Lupton, 2015b). Thus, for example, the data
assemblage that is generated from a user’s online searching habits one
day is different from the next day’s data assemblage. Given the responsive
nature of the interactions of digital users with search engines and brows-
ers, the next day’s searches will be algorithmically influenced by previous
searches and browsing, and the user will be exposed to advertising and
suggestions for hyperlinks based on this history. Similarly, when people
who use wearable devices collect information on their bodily functions
such as heart rate and calories they have burnt while exercising, the data
assemblage they generate changes each time new biometric informa-
tion is fed into their device. These users may then respond to the graphs
and metrics produced by the software on their device and change their
behaviour accordingly, generating new data assemblages.
NEOLIBERALISM, SELF-RESPONSIBILITY AND THE

COMMODIFICATION OF HEALTH DATA
The informationalization of medicine and human bodies is also part of

a wider move in medicine to an economy based on human bodies and
their products and an increasing capitalization of medical knowledge and
practice. For some time, the medicalization of many realms of everyday
life has been spreading into a multitude of domains, redefining problems
that were previously understood as moral, social or political as medical


matters instead (Clarke, Shim, Mamo, Fosket, and Fishman, 2010;

Lupton, 2012a). Digital technologies have contributed to the medicaliza-
tion of society in significant ways, including the intensification of the focus
on the importance of good health, the diversification of ways of represent-
ing and sharing information about health, illness and healthcare and the
growing commodification of information about people’s health and illness
experiences and practices.
Digital data contribute to a new bioeconomy, in which information
about people’s bodies, states of health or illness and medical treatments
has gained significant commercial value (Lupton, 2016b). For example,
where once the exchange of experiences by patients online was confined to
smaller networks and the material supplied was limited to others directly
affected by an illness or condition, the affordances of social media and of
digital data storage and harvesting technologies have led to such material
receiving a much greater audience and becoming invested with commercial
value (Mazanderani, Locock, and Powell, 2013; Lupton, 2014c). While
there is much talk of ‘personal’ or ‘small’ data, or data that individuals
collect for their own purposes about themselves, these data are usually
uploaded to the cloud computing-based digital archives of the developers
of the devices and software. Once this occurs, people lose control over
their data and can no longer guarantee that they will not be used by second
or third parties and in ways that are unanticipated and unintended. Digital
health technologies and initiatives, therefore, bring together commercial
with managerial, governmental, research and personal objectives. Indeed,
in some cases it is difficult to discern the boundaries between these, as the
use of personal health data collected for private purposes, for example, is
now spreading into a range of other domains, including the workplace,
schools, insurance and healthcare management (Lupton, 2016b).
Consonant with these uses of digital health technologies is a discourse
that privileges the ideal of the ‘digitally engaged patient’, or the patient
who uses digital technologies to ‘take charge’ of her or his health by
actively seeking out information online, using wireless self-care and self-
tracking devices for health-promoting purposes (Lupton, 2013b). Such
patients are positioned as ‘empowered’ by digital health technologies in
ways that reduce the burden of healthcare costs on economic systems.
This ideal thus conforms to a general move in neoliberal political systems
to encourage citizens to engage voluntarily in strategies to improve their
lives and productivity. In recent decades, people who are already ill as well
as members of populations targeted for health promotion efforts have
been encouraged to ‘take control’ of their health for their own benefit
but also that of the economic stability of their nation. These issues have
become particularly pressing in the wake of the global financial crisis and


the introduction of austerity measures in many countries (De Vogli, 2011;

Lupton, 2012b, 2016a).
In many domains, presenting oneself as achieving the ideals of pro-
ductivity, flexibility, responsiveness to change and entrepreneurialism
are signs of success and superior self-control. The entrepreneurial self
who can be flexible, high-performing, self-managed and responsive to
change is a key figure in workplace culture. However, both in workplace
culture and in cultures outside of the workplace there is evidence of the
blurring of domains. Ideal workers are not only productive in their work
outputs and achievements; they are healthy, fit and lean. The physically
fit and active person is also a productive, successful worker (Longhurst,
2000; Kelly, 2013). The link between good health, physical fitness and
worker productivity is particularly evident in the case in the American
workplace, where many employers take responsibility for covering a
proportion of the health insurance coverage of their employees as part
of a benefit package in the absence of nationalized public healthcare
systems such as those offered in other Western countries. Given this
responsibility, employers have a financial interest in promoting ‘wellness
programmes’ among their staff members in addition to desiring to reduce
absenteeism and subsequent lost productivity due to employee illness.
More than 90 per cent of employers with 200 or more staff members offer
some type of wellness or health promotion programme to their employees
(Zamosky, 2014).
The Affordable Care Act allows American employers to provide
even greater financial incentives to their staff members for participation
in workplace health promotion initiatives and demonstrating progress
towards attaining personal health goals. Participating employees can
receive up to a 30 per cent discount on their health insurance premiums
(Zamosky, 2014). Many employers are turning to the use of digital self-
tracking technologies (‘digital wellness tools’) as part of workplace health
promotion programmes. Wearable technology manufacturers such as
Fitbit are brokering deals with employers and insurance companies to sell
their fitness and activity trackers and data analytics software as part of
these wellness programmes. Employees must give their consent to wearing
the devices and allowing employers to view their activity data. However,
when incentives such as lower health insurance premiums are offered, such
consent becomes less voluntary (Olson and Tilley, 2014). Various financial
incentives have been offered by employers to encourage their workers to
lose weight, give up smoking and participate in health assessments, includ-
ing such checks as having their weight measured and their blood pressure
and cholesterol levels tested and the like. Some employers impose higher
health insurance premiums for those employees who do not meet health


standards or choose not to undergo health checks (Mello and Rosenthal,

2008; Hendrix and Buck, 2009).
DATAVEILLANCE, DATA SECURITY AND CIVIL

RIGHTS
As digital data become increasingly commodified and commercialized,

new forms of surveillance and social inequalities are developing that go
beyond concepts of the digital divide. In relation to medical and health-
related information, there are many ways in which existing social injustices
and disadvantages may be perpetuated by the use of big data to make
inferences or predictions about people’s behaviour. Privacy and data
security are also important factors in the collection of health and medical
data. The vitality of digital data and the many different ways in which
digital data may be repurposed by different actors and agencies cannot be
predicted, and therefore are not readily amenable to control.
In this world of smart objects, our domestic and other everyday
machines can begin to make decisions for us and generate information
about us to which we may not have access. Our smart objects may indeed
know more about us than we know about them. The decisions that they
make on our behalf may be wrong or incomplete, and these decisions may
have significant effects on our life experiences and chances: whether we
are offered low premiums for insurance, a job we have applied for or a
bank loan, for example (Lloyd, 2014). It is here that the use of digital data
slides into dataveillance, or the systematic use of people’s personal data as
a form of surveillance and regulation (Rosenzweig, 2012; Esposti, 2014;
Rosenblat, Wikelius, Boyd, Gangadharan, and Yu, 2014).
Internet and legal scholars have argued that Web 2.0 technologies have
had a profound effect on concepts and practices of privacy that remain
in flux as changes occur in the ways in which personal information is col-
lected, stored and used online. Added to these complexities are the difficul-
ties that many Internet and mobile technology users face in understanding
or accessing the terms and conditions of the software and hardware that
they use (Nissenbaum, 2011; Rosenzweig, 2012; Tene and Polonetsky,
2013b, 2013a). Sometimes users agree to the use of their personal data
as an unavoidable part of accepting the terms and conditions of health
and medical devices, apps and platforms (although to what extent users
actually read through the fine-print on these documents is not known)
or customer loyalty schemes. In other cases their data may be accessed
by others without users’ knowledge or consent. Developers often fail to
inform users that their data are available to third parties (Ackerman, 2013;


arasohn-Kahn, 2014). The US Federal Trade Commission found that

S
12 free health and fitness apps focusing on such behaviours or conditions
such as smoking cessation, physical activity and pregnancy shared user
data with a total of 76 third parties. These data in some cases included
geo-location, gender, names and email addresses, exercise and diet habits
and medical symptom searches (Kaye, 2014).
The predictions that are made by dataveillance can result in predic-
tive privacy harms, in which people may be discriminated against simply
because they are categorized within certain social groups because of
their data (Tene and Polonetsky, 2013a; Crawford and Schultz, 2014;
Rosenblat, Wikelius, Boyd, Gangadharan, and Yu, 2014; Gangadharan,
2015). Given the ways in which digital datasets may be used to manipu-
late, coerce, target and manage people, and the associated potential for
social and economic disadvantaging of already marginalized social groups
(Gangadharan, 2015), it has been contended by some commentators that
big data is a civil rights issue. The inferences made about a digital user’s
preferences and habits may lead to the denial of rights and services. In
relation to health and medical data, existing inequities may be perpetu-
ated by their misuse. Data brokers sell lists of people with such conditions
as mental health illnesses, HIV/AIDS, Alzheimer’s disease and cancer
and who may have been the victims of sexual or domestic assault, as part
of their commercial efforts to profit from personal data (World Privacy
Forum, 2013; Libert, 2014). Sensitive medical conditions can become
identifiable by the examination of other datasets, such as purchasing
habits (Rosenblat, Wikelius, Boyd, Gangadharan, and Yu, 2014). This is
made even easier by platforms such as customer loyalty programmes that
encourage people to upload self-tracked health and fitness data as part of
their reward programme in addition to purchasing habits.
As noted above, personal data on health, fitness and medical conditions
are used by some companies to assess customers’ eligibility for health or
life insurance. While these assessments may mean that conditions or risks
can be identified early, there is also the prospect of certain types of patients
being excluded from healthcare coverage once these analytics have decreed
that they are susceptible. Particularly in the US, such individuals are often
those who lack sufficient access to healthcare in the first place because of
their socioeconomic disadvantage. As part of commercial marketing and
advertising using data harvesting and targeting, people who have been
identified from their online activities such as searching and browsing as
having a serious health condition or as unemployed may be excluded from
favourable offers because they are not viewed as profitable (Libert, 2014).
In 2014 the first legal case using personal health and fitness data from a self-
tracking device as evidence to support a plaintiff’s personal injury lawsuit


came to the courts in Canada, raising concern among legal and privacy
experts that such data may become subpoenaed by insurance companies
that are involved in similar claims or in law enforcement (Gibbs, 2014).
A reliance on the information that digital data represent also tends to
exclude marginalized groups who have little access to the Internet or who
do not own computer hardware: the poor, the homeless, the unemployed,
the elderly and those living in areas that are not well served by wireless
technologies. When big data are used and privileged over other forms of
information, the habits and preferences of wealthy people living in the
Global North are included for consideration, while those of marginalized
groups are not. This type of exclusion may mean that governments do not
take their needs into account when formulating policy and distributing
funds for public goods and services (Lerman, 2013).
Not only are personal data now used by second and third parties, the
security of these data is in question. A study of over 80 000 health-related
web pages found that 90 per cent leaked user information to outside
parties, including commercial data brokers (Libert, 2014). A report pub-
lished by the US Privacy Rights Clearinghouse found that mobile health
and fitness app developers often have no privacy policy and send the data
uploaded by app users to undisclosed third parties. Few of these develop-
ers encrypted all data connections and transmissions between the app
and developer’s website (Ackerman, 2013). There have been numerous
breaches in the USA involving the hacking of information in companies’
data archives, including those of hospitals and wellness companies storing
the personal information of thousands of clients’ employees (Pettypiece,
2014). In late 2014 the digital archives of Sony Pictures corporation were
hacked in a cyber-attack, and the personal details of Sony employees,
including their healthcare records, home addresses and social security
numbers were accessed (Rosenblatt, 2014). The revelations of the docu-
ments leaked since mid-2013 by Edward Snowden, a former contractor
for the National Security Agency, received a high level of media publicity,
bringing people’s attention to the mass data surveillance of citizens by
Western nations’ security agencies.
It is evident that members of the public are becoming aware of the ways
in which their personal data may be used by other actors or agencies in
ways that may violate their privacy. Two Pew reports outlining the find-
ings of surveys about Americans’ attitudes to data privacy (Pew Research
Center, 2014; Madden and Rainie, 2015) found that they were aware of
many aspects related to how their privacy was being challenged and of data
security breaches, including national security agencies’ dataveillance of citi-
zens and how their personal information is used by commercial companies.
The first report (Pew Research Center, 2014) found that when respondents


were asked to identify the most sensitive piece of personal information that
may be available online, health and medical-related data were nominated
as second most sensitive, following social security numbers. Indeed, more
than half of the respondents viewed information about their health status
and the medicines they took to be ‘very sensitive’ data. There were no dif-
ferences by gender or age, but people with higher levels of education and
income were more likely than others to consider this information to be very
sensitive. The second report (Madden and Rainie, 2015) noted a significant
element of personal data insecurity that had begun to affect people’s atti-
tudes towards dataveillance and data privacy. Very few respondents felt
they had much control over the types of data that are collected on them and
how these data are used. They expressed strong views about the importance
of preserving personal data privacy and security.
A Wellcome Trust study (2013) drawing on qualitative research with
British people similarly found that health and medical-related data were
viewed differently from other forms of data by many of the participants.
The participants viewed the collection and sharing of their own data
across healthcare sites (their medical records) in a positive light as ben-
eficial to their own healthcare. However, they were less sanguine about
these private data being shared outside the NHS system, and especially
with employers and private companies who may seek to profit from the
data. Australian research has found that people express powerlessness
in the face of the authority of the Internet empires to collect, own and
harvest their personal data (Andrejevic, 2014; Andrejevic and Burdon,
2015). My study with Mike Michael (Michael and Lupton, 2016) explor-
ing Australians’ responses to big data using focus groups found that
many of the participants had some awareness of the diverse ways in which
surveillance technologies, mobile devices, search engines and social media
sites collect information about people’s activities. There was evidence of a
somewhat diffuse but quite extensive understanding on the part of the par-
ticipants of the ways in which data may be gathered about them and how
the data are used. While the term ‘scary’ was used by some participants to
describe the implications of big data, they were rather uncertain about the
specific details of how their personal data became part of big datasets and
for what purposes this information was used.
CONCLUSION
It has often been asserted in media and communication studies that

people’s concepts of privacy have changed in response to the sharing
of personal information that now takes place on social media sites. Yet


we may be seeing a transformation in attitudes in response to the con-

troversies and scandals about big data that have received a high level of
public attention over the past few years, reshaping concepts of privacy yet
again. While people appear to be increasingly aware of how their personal
data may be used for commercial or surveillance purposes, they are less
knowledgeable about the extent to which this information can be used to
make inferences that may exclude them from access to employment and
international travel opportunities, credit, insurance coverage and goods
and services. In response to these issues and concerns, privacy organiza-
tions and legal scholars are beginning to publish reports that emphasize
the importance of protecting digital data privacy and call for better rights
for consumers. They have contended that the people should be provided
with greater access to their personal data and that companies, security
agencies and third parties should be more transparent about what they do
with these data (Ackerman, 2013; Polonetsky and Tene, 2013; Tene and
Polonetsky, 2013b, 2013a; Crawford and Schultz, 2014). Some community
organizations have also begun to call for open access to health data, allow-
ing people to use their own personal information and to share them with
others if they so choose (see, for example, The Small Data Lab, 2014).
Far more work is required from critical researchers and scholars to
draw attention to these issues and to follow developments in digital health
technologies and data practices, both personal and organizational, as they
occur. The transformations wrought by digital health technologies are
far-reaching and pervasive. They require close documentation and analy-
sis to ensure that they work to alleviate rather than exacerbate existing
inequalities. In an era in which massive and diverse forms of digital data
are continuously collected on individuals, there is potential for such data
to improve health outcomes and health service delivery. However, as I
have argued in this chapter, the surveillance capacities of digital technolo-
gies and the data they generate, the commercial and governmental value of
these data and the possible privacy harms and the entrenching of forms of
social and economic disadvantage that may eventuate require continuing
identification and evaluation.
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4 Digital health technologies and digital

data: new ways of monitoring, measuring

Deborah Lupton - 9781784717766

M4036 - OLLEROS PRINT.indd 85 24/08/2016 15:20

Deborah Lupton - 9781784717766

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r­ ecognizes the dynamic nature of people’s interactions with technologies

DIGITAL HEALTH TECHNOLOGIES: AN OVERVIEW

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THE DIGITAL DATA ECONOMY AND LIVELY

Digital health technologies are part of a trajectory of representing and

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humans as they construct digital data assemblages in endless intertwinings

Deborah Lupton - 9781784717766

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are often represented to be in popular discourses. Rather they are socio-

NEOLIBERALISM, SELF-­RESPONSIBILITY AND THE

The informationalization of medicine and human bodies is also part of

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matters instead (Clarke, Shim, Mamo, Fosket, and Fishman, 2010;

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the introduction of austerity measures in many countries (De Vogli, 2011;

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standards or choose not to undergo health checks (Mello and Rosenthal,

DATAVEILLANCE, DATA SECURITY AND CIVIL

As digital data become increasingly commodified and commercialized,

Deborah Lupton - 9781784717766

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­ arasohn-­Kahn, 2014). The US Federal Trade Commission found that

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Deborah Lupton - 9781784717766

M4036 - OLLEROS PRINT.indd 97 24/08/2016 15:20

It has often been asserted in media and communication studies that

Deborah Lupton - 9781784717766

M4036 - OLLEROS PRINT.indd 98 24/08/2016 15:20

we may be seeing a transformation in attitudes in response to the con-

Deborah Lupton - 9781784717766

M4036 - OLLEROS PRINT.indd 99 24/08/2016 15:20

Deborah Lupton - 9781784717766

M4036 - OLLEROS PRINT.indd 100 24/08/2016 15:20

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