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Original Article
The digitally engaged patient:
Self-monitoring and self-care
in the digital health era
Deborah Lupton
Department of Sociology and Social Policy, University of Sydney, RC Mills Building,
A26, Fisher Road, Camperdown, 2006, Australia.
E-mail: deborah.lupton@gmail.com
Abstract The phenomenon of digital health has emerged as a key dimension of con-
temporary healthcare policy and delivery in many countries. This review article focuses on
one aspect of digital health discourses: the concept of patient engagement that
encourages patients to take up the new digital media technologies to engage in self-
monitoring and self-care, or what I term ‘the digitally engaged patient’. A critical
approach is adopted to examine the sociocultural dimensions of eliciting patients to
become ‘digitally engaged’in their own medical care and preventive health efforts. It is
argued that the techno-utopian discourses articulated in the mainstream healthcare
policy literature concerning the possibilities and potentialities afforded by digital health
technologies do not acknowledge the complexities and ambivalences that are part of
using self-monitoring and self-care technologies for monitoring health and illness states,
both for patients and for healthcare providers. These include the surveillance and
disciplinary dimensions of using these technologies, the emotions and resistances they
provoke, their contribution to the burden of self-care and the invisible work on the part of
healthcare workers that they require to operate.
Social Theory & Health (2013) 11, 256–270. doi:10.1057/sth.2013.10;
published online 19 June 2013
Keywords: digital health; digital media; healthcare; patient engagement;
telemedicine; sociology
Introduction
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 new digital medical and health-related technologies,
variously termed ‘digital health’,‘eHealth’, Medicine 2.0’or ‘Health 2.0’. In this
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literature, digital media technologies are described as contributing to a range of
aspects of medicine and healthcare. These include the use of digitalised health
information systems; the employment of wireless mobile digital devices and
wearable, implanted or inserted biosensors for lay people to monitor their health,
wellbeing and physical function and engage in self-care of illness, chronic
medical conditions or disability remotely; conducting medical consultations via
digital media; the use of digital technologies by lay people to seek out informa-
tion about health, illness and medical treatments and therapies and to share their
experiences and health-related data with others; the use of social media sites by
healthcare providers to provide information about their services and interact
with patients; the digitising of individuals’genomic sequencing data; and digital
medical imaging.
Predictions of how these technologies will come to dominate in medical and
public health as a means of delivering patient care, collecting and sharing
medical and health-related data and bestowing responsibility upon lay people
to manage their own health have proliferated. Digital health technologies
are described as promoting communication between healthcare providers and
patients, encouraging lay people to engage in preventive health activities and
improving patient adherence to treatment protocols and their self-management
of chronic diseases.
The rapid changes wrought by digital health technologies, particularly the
newer technologies associated with Web 2.0 innovations, have only just begun
to be documented and analysed in the academic critical social scientific lite-
rature. Most publications have been written from a largely uncritical preventive
medical or health promotion perspective and adopt a techno-utopian perspec-
tive, tending to laud the possibilities of these technologies without acknow-
ledging the social, ethical and political implications of their use. From a critical
sociological perspective, however, a more in-depth and nuanced analysis may be
undertaken of how these technologies may operate to construct various forms of
subjectivities and embodiments and participate in the configuring and reproduc-
tion of power relations.
There is an extensive sociological literature that has addressed patient
consumerism and medical technologies in general, and more specifically
previous forms of telemedicine and self-care and self-monitoring technologies.
Writers publishing on these topics are able to provide important insights into the
complexities of how patients engage with these technologies and the implications
for how they conceptualise their bodies/selves, health, illness and healthcare. In
this article, following an overview of the concept of the digitally engaged patient,
I draw upon some of this literature and highlight its implications for the newer
forms of practices, identities and politics of self-care and self-monitoring as
they promoted in the digital health literature. The broad theoretical approach
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largely rests on what is variously titled the sociotechnical or material semiotic
approach to human–technology interactions. Writers in this literature now often
refer to the ‘assemblages’that are configured via the encounters of human
bodies, knowledges, ideas, discourses and material objects and spaces (Marcus,
2006). From this perspective, technologies enact complex bodily experiences and
concepts of selfhood. Changes in medical technologies represent transformations
in how bodies are conceptualised, touched, managed and visually displayed.
Rather than simply neutrally mirroring key aspects of a pre-given natural
body, technologies as they operate in medicine and healthcare configure and
reconfigure the body in certain ways, enacting how they are understood and
treated (see, for example, Mol and Law, 2004; Nicolini, 2007; Oudshoorn, 2011).
The Digitally Engaged Patient
When discussing the apparent imminent revolution in healthcare driven by the
new digital technologies, the terms ‘patient engagement’or ‘patient empower-
ment’(Barello et al, 2012; Morden et al, 2012; Swan, 2012) are frequently used.
In this discourse, the ‘patient’or ‘lay person’becomes a ‘participant’who is
actively involved in self-care: ‘at the centre of action-taking in relation to health
and healthcare’(Swan, 2012, p. 97). More specifically, and particularly in the
United States, the term ‘patient activation’is employed, often in relation to
a bureaucratic model representing patients as being ‘more effective managers of
their health and healthcare’(Greene and Hibbard, 2012, p. 520).
These discourses represent the latest version of the ‘patient as consumer’
approach that has circulated in various formulations since the 1970s. In the wake
of consumerist and health activist movements emerging during that decade,
there were calls from some quarters for healthcare to become ‘democratised’, for
lay people to become more conversant with health and medical issues, engage in
preventive health behaviours and seek to position their doctors as providers
whose knowledge and expertise should not simply be taken for granted (Lupton,
1997a; Greener, 2003; Mort et al, 2009). At that time, lay people had little access
to alternative sources of medical knowledge other than coverage of health and
medical issues in the news media, books written for a lay readership and patient
support groups that may have shared information in face-to-face meetings or by
distributing photocopied newsletters. Since then, access to medical information
and to other patients’experiences of healthcare and treatment has expanded
exponentially: first via Web 1.0 and now Web 2.0 technologies.
In contemporary discussions of patient consumerism, the discourse of patient
engagement is brought together with that of digital medicine to construct the
figure of what I term ‘the digitally engaged patient’when lay people are advised
Lupton
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that they should use digital technologies as part of patient engagement practices.
For some commentators, the Web 2.0 era has heralded new ways of encouraging
patients to be more engaged in healthcare and preventive health endeavours
that go well beyond using websites to seek out health information or participat-
ing in patient support groups.
One important feature of Web 2.0 technologies is their mobility and capacity to
be used across diverse spatial and temporal settings. References are now
frequently made to the phenomenon of ‘ubiquitous computing’, or the capacity
to connect to the Internet wirelessly from almost any location using mobile
digital devices that are small and readily portable (Goggin, 2011). Mobile digital
technologies and patient information exchange websites have been established
that allow people with specific conditions to share information about their
symptoms and treatments, facilitating the aggregation (crowdsourcing) of data.
Patients are now often encouraged to use web-based personal health repositories
like Microsoft HealthVault to keep records of their symptoms and treatments,
view their medical test results and facilitate communication with healthcare
providers (Gruman, 2013).
A major form of digital patient engagement is that involved in telemedicine
practices. In several countries over the past decade, including the United States,
the UK and some parts of continental Europe, telemedicine has become a major
part of healthcare delivery. Telemedicine involves using digital and other
technologies to encourage patients to self-monitor their medical conditions
at home, thus reducing visits to or from healthcare providers, and to commu-
nicate with healthcare providers via these technologies rather than face to
face. With its promise of reducing healthcare costs, this approach to medical
care has been bestowed with new importance following the global financial
crisis and the resultant strain on the economies of many developed countries
(De Vogli, 2011).
For example, the new model of healthcare funding proposed by the US Patient
Care and Affordable Care Act (otherwise known as ‘Obamacare’) that was signed
into law in 2010 moves healthcare away from the traditional fee-for-service
model to one that rewards preventive care activities by financially penalising
hospitals with high patient readmissions. This system promotes telecare and
patient self-monitoring at home as means of achieving fewer readmissions
(Malykhina, 2013). It employs not only the older technologies used in telecare
such as videoconferencing (now facilitated by devices such as smartphones and
tablet computers) but also newer wireless technologies, such as wearable
sensors attached to the body by adhesives to record such bodily functions as
heart rate, respiration and physical activity levels, ingestible medications
embedded with sensors that can send digital signals to armbands worn by the
patient and wireless stethoscopes that enable doctors to hear the heartbeat of
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patients remotely. These technologies are at the heart of promoting remote
patient monitoring (Ringquist, 2013).
Digital Health Technologies, the Body and Patienthood
The discourses of the digitally engaged patient suggest that ‘empowerment’may
be achieved by using sophisticated digital technologies for self-monitoring and
self-care. These discourses suggest that control over one’s recalcitrant body and
its ills can be better achieved via technological means. Lay people are expected
and encouraged to develop routines to regularly assess these physiological
markers and thus to develop the type of expertise in monitoring their bodies that
was once the preserve of healthcare providers.
The current focus on digitising human bodies and the data they produce is the
latest step in an inexorable move in medical practice towards using visualising
and monitoring technologies to map and survey the human body, to gaze inside
it and examine its functions in greater detail and to record and analyse the data
produced by these activities (Cartwright, 1995; Waldby, 1997). The trend
towards encouraging patient self-care facilitated by digital technologies is under-
pinned by what has been described as a shift from ‘mechanical’medicine’to
‘informational’medicine (Nettleton, 2004). This shift has involved less of a
reliance on the haptic (touch) and the concept of medicine as an ‘art’to a focus
on generating and using data on the human body, on the part of both medical
practitioners and of patients. It is assumed that more information necessarily will
lead to better healthcare and economic efficiencies, both by encouraging patient
engagement and self-responsibility for their health and providing healthcare
services with the data they need to improve medical care and service delivery
(see, for example, commentary by Swan, 2012; Topol, 2012; Dentzer, 2013).
Advocates of digital health technologies argue that ‘consumers’are an integral
part of the ‘digital revolution’that they predict is about to occur in healthcare,
and that these ‘consumers’should play an active part in ‘digitising’their bodies
(Topol, 2012). Indeed, one of the central features of digital medicine is the
individualisation of detailed data that may be produced. It is asserted that
the more detail about their physiology, everyday habits and genetic makeup
individuals are able to access, the better they will be able to perform as
‘activated’or ‘engaged’patients (Swan, 2012; Topol, 2012). Here is a new vision
of the ‘digital archive’of the body (Waldby, 1997): patient bodies that
are ‘digitised’and therefore ready to become ‘engaged’and ‘activated’,to‘take
control’of their health and to produce their own data on themselves and share
these data with others as well as access the data produced by medical testing and
medical records.
Lupton
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The concept of the digitally engaged patient has implications for the spatial
dimensions of healthcare. The clinic and the normalising and assessing gaze of
healthcare providers are incorporated into the everyday domestic spaces and
practices of the lay person via these technologies. As is the case of previous
forms of telecare, many of the new digital health technologies are directed at
repositioning healthcare, locating it within the domestic domain rather than the
clinic and moving physical encounters of patients with healthcare providers to
virtual encounters (Mort et al, 2009; Oudshoorn, 2011, 2012). As a consequence,
the home becomes one node of a dispersed network of healthcare technologies in
multiple sites and involving multiple actors who interpret the data supplied by
telecare patients, diagnose and prescribe treatments and answer patients’
queries. As such, the ‘medical gaze’is fragmented and distributed over different
actors and locations (Nicolini, 2007; Oudshoorn, 2011, 2012) as part of the
phenomenon Nettleton and colleagues refer to as ‘e-scaped medicine’(Nettleton,
2004).
Discipline and Resistance
Digital health technologies have disciplinary as well as surveillant capabi-
lities. They make specific demands of patients, requiring them to engage in self-
monitoring practices at certain times of the day, for example, or beeping to
remind them to take medication, or requesting them to rate and rank their
healthcare providers on an evaluation website, or to upload their personal
experiences of illness and medical treatment on patient support websites. In the
discourse of the digitally engaged patient, therefore, ‘empowerment’becomes a
set of obligations (Veitch, 2010).
Thus, for example, research on Dutch heart patients using telemedicine
devices such as a system to measure their body weight and blood pressure,
a mobile phone capable of conducting and transmitting an ECG and a device
to diagnose heart-rhythm irregularities found that patients’bodies and home
environments were disciplined by the routines expected of them. They were
expected to conform to precise daily schedules of monitoring their bodies and
sending data to their healthcare providers and respond to messages and
indicators sent to them at various times daily (Oudshoorn, 2008, 2009, 2011,
2012).
Patients may value these technologies as a way of avoiding a visit to the doctor
when they would rather not see them face to face, and thus establish a distance
from medical surveillance (Andreassen et al, 2006). Conversely, they may find
the obligation of self-surveillance overwhelming, forcing them to confront their
illness, engage in routine actions they would rather avoid or deal with digital
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interactions that are tiresome. Some patients respond to the disciplinary and
surveillance imperatives of self-care and self-monitoring by resisting or evading
healthcare providers’directions and the obligations expected of them. Indivi-
duals may have other priorities and thus simply fail to use the devices provided
to them in the ways expected of them. Patients may ‘play the system’,
experiment with their therapies or withdraw information from the healthcare
providers if it does not conform to expectations (Nicolini, 2007).
Patients’resistance to the use of digital health devices for self-care is often
explained by such factors as incompetence, indifference, ignorance or even
technophobia on the part of older people in relation to using these technologies.
However, even younger people who are more experienced in the use of digital
technologies more generally may resent, challenge or simply ignore the tasks
and responsibilities demanded of them by telemedicine (Oudshoorn, 2011).
Some people prefer to engage in physical rather than virtual encounters with
healthcare providers, wanting what they view as a more personal interaction, in
addition to using telemedical technologies for some purposes (Mort et al, 2009;
Oudshoorn, 2011).
The techno-utopian ideals of the technologies used for these purposes are
frequently challenged in the lived experiences of the patients who use them.
Mol conducted a study of Dutch people with diabetes who were required to
monitor their blood glucose levels regularly throughout the day. She notes the
complexities and difficulties of using self-monitoring technologies and in inter-
preting the data produced: ‘in practice daily care turns around messy, material,
smelly, bloody, frightening, or tedious activities that tend to be difficult to do (for
professionals as well as patients)’(2009, pp. 1756–1757). Mol (Mol and Law,
2004; Mol, 2009) goes on to point out that attempts to exercise control over the
diabetic body, including using monitoring and self-care devices, are doomed to
fail, simply because of the vagaries and erratic nature both of the body and the
technologies designed to assist people take control. As she argues, ‘[t]echnology
is never quite tamed. It doesn’t offer control, and it changes along with the other
elements of daily care practices’(Mol, 2009, p. 1757).
The Emotional Dimensions of Self-Care and Self-Monitoring
As in discourses attempting to represent the patient as a ‘consumer’in earlier
eras (Lupton, 1997a), contemporary writings on patient engagement assume
a rational, emotionally disengaged ‘empowered’subject who is motivated and
equipped with the economic and cultural capital to engage in self-monitoring
and self-care (Oudshoorn and Somers, 2006; Mort et al, 2009; Andreassen and
Dyb, 2010; Oudshoorn, 2011). As sociologists of health and illness have argued
Lupton
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for some decades, these representations fail to acknowledge the mutual
dependencies, ambiguities and ambivalences of the doctor–patient relationship,
the fact that lay people are often feeling highly vulnerable when they need
healthcare. Particularly if they are elderly, from a socioeconomically disadvan-
taged or marginalised social group or very ill or suffering severe pain, patients
may find it difficult to challenge medical authority or simply do not wish to
do so (Lupton, 1996, 1997a,b; Greener, 2003; Andreassen and Trondsen, 2010;
Salander and Moynihan, 2010). There may be very strong emotional investments
in allowing one’s doctor to ‘take control’when one is ill, suffering or anxious
about one’s health. Lay people frequently shift between adopting a consumerist
perspective and wanting to invest their trust in their doctor, depending on the
context (Lupton, 1996, 1997a).
Sociological research has further identified the emotional investments
that may be an integral dimension of self-care practices facilitated via digital
technologies. Norwegian researchers (Andreassen et al, 2006; Andreassen and
Dyb, 2010; Andreassen, 2011) found that patients may appreciate the benefits
offered by using telemedical technologies for communicating with healthcare
professionals, particularly if they find it difficult to travel to seek face-to-face
medical attention. However patients’trust in their healthcare providers remains
an integral aspect of such use: without trust communicating via technologies
would not be effective. Indeed, trust may be even more important than in a face-
to-face medical encounter, given the less personal nature of digital communica-
tion (Andreassen et al, 2006).
Many studies have demonstrated that the lived reality of tracking one’s illness
and engaging in self-care can simply be too confronting, tiring or depressing for
people who are chronically or acutely ill. Self-monitoring and self-care for health
and medical purposes become part of the burden of treatment with which
patients are confronted. For example, Oudshoorn (2011) found that some of the
heart patients she studied who resisted using these technologies did so because
they did not wish to have a constant reminder that they were ill and they
resented the task of monitoring themselves constantly or having their homes
transformed into a medical clinic. The surveillance offered by these technologies
were thus positioned by these ‘non-users’as restrictive of their autonomy,
contributing to anxiety about their health or detracting from their preferred sense
of selfhood and embodiment.
Not all patients, however, resist or resent using monitoring technologies.
While some users may experience self-monitoring or self-care technologies as
restrictive and constraining of their autonomy, for others these technologies
afford the possibility to evade the medical gaze, take control over one’s illness
and one’s wayward body or achieve independence. Several researchers have
explored the use of digital health technologies by older people, including such
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monitoring digital devices as motion detectors, tags or badges for people with
dementia so that their movements might be kept track of without the need for
physical restraints, sensors in beds and chairs, which are able to monitor sleep
patterns, weight and movement in individuals living in residential care and
‘smart floors’that can detect if a person has fallen. These researchers have
concluded that although these technologies raise questions about bodily con-
straints, ageism, power relations and inequities, they may also be regarded as
enabling and empowering devices that are able to assist older people achieve
better mobility, independence and feelings of security and allow them to achieve
their goal of living at home longer (Brittain et al, 2010; Joyce and Loe, 2010;
Loe, 2010; Long, 2012).
Some studies have shown that when patients believe that better knowledge of
their bodies is achieved via self-monitoring devices they feel as if they are more in
control, and this leads to greater security and reassurance. However, if the data
they produce suggest that their health is suffering, or if these data conflict with
their own subjective and phenomenological interpretation of their state
of health and wellbeing, this can be unsettling and anxiety- or fear-provoking.
As another Dutch study of people with diabetes found (Hortensius et al, 2012),
whereas some of the interviewees described the self-monitoring technology as
a‘friend’, bestowing peace of mind, confidence, freedom and certainty, others
represented it as a ‘foe’. They disliked having to prick their finger constantly to
elicit the blood for the test, and feeling ashamed, anxious, helpless or frustrated
by glucose readings that were not in the appropriate range.
Similarly, Danish research (Huniche et al, 2013) investigating patients’
experiences with self-monitoring their chronic obstructive pulmonary disease at
home found that the biometric readings these patients produced on their bodies,
such as their oxygen saturation levels and lung function, were valued for their
objectivity, their ability to uncover the mysteries of their bodies. The patients
responded emotionally to the numerical data they produced, feeling encouraged,
more secure or reassured when the numbers were in the acceptable range, but
experiencing anxiety, depression or fear of physical deterioration when their data
exceeded this range.
Implications for Professional Practice
Digital health technologies also have profound implications for the embodied
practices and professional identities of healthcare workers. Research on tele-
medical technologies has demonstrated that healthcare professionals find it
difficult at times working with digitised virtual bodies that are at a physical
distance from them and mediated via technologies,. They must deal with not
Lupton
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being able to use their senses as they would when viewing and touching patients
or employing their localised and intuitive knowledges to assess the patients’
wellbeing, instead relying on virtual representations of the fleshly body: images
or metrics (Mort et al, 2003; Oudshoorn, 2008; Dyb and Halford, 2009). Whereas
certain types of information are gained via digital technologies, other types are
lost (Mort et al, 2003).
Mort and Smith (2009) remark upon the mythological status that information/
data has obtained in healthcare discourses and policies, noting that knowledge
and action in healthcare delivery are often achieved in spite of rather than as a
result of information systems. They point out that the methods used to obtain
data in the telecare setting structure what is recorded and what is not within
stringent limits. The healthcare workers working in this system often struggle
with and rework the information they gather or are provided with in their
attempts to diagnose and treat patients, seeking to add greater contextual
information to these data. Their medical judgement is based on interpreting
multiple and often conflicting heterogeneous streams of incomplete data.
As this suggests, much ‘invisible work’(Mort and Smith, 2009) goes into
translating digitised images and metrics sent from other locations and ‘re-
embedding’the information into a context in which it is will be used. Digital
data, like any other kinds of data, must be interpreted, made sense of, located
within existing knowledges and data sets and negotiated (Mort et al, 2003;
Coopmans, 2006; Oudshoorn, 2008; Mort and Smith, 2009; Oudshoorn, 2011).
The spatial, historical and political contexts in which data are gathered and
interpreted also require acknowledgement. The wider network of relations
(including other technologies) within which healthcare workers operate and
the constraints posed by these, the dominant orders and power relations of
medical work and the professional identities that are invested in these and the
locational dimensions of healthcare practice challenge the assumptions that
underpin the use of digital technologies in healthcare (Dyb and Halford, 2009;
Halford et al, 2010).
The newer digital health technologies, as well as continuing to negotiate all of
these issues, also raise other difficulties and complexities. Concerns have been
raised about how patients and healthcare providers will be trained to use such
technologies and how the reams of data that lay people may collect on their
health from self-monitoring technologies can be used by healthcare providers
(Gruman, 2013; Malykhina, 2013; Ringquist, 2013). Some doctors and healthcare
institutions are also concerned about the boundaries between patient and
doctor breaking down and patient privacy issues in relation to the use of social
media (Thielst, 2011). In relation to patient ranking sites, it has been argued
that views expressed on healthcare ranking sites might be unrepresentative and
that healthcare providers may ‘game’the system by giving positive ratings to
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their own service or denigrating a rival service (Greaves et al, 2013; Rozenblum
and Bates, 2013).
Discussion and Conclusion
Digital health technologies and the disciplinary regimes they configure as part of
the practices of self-monitoring and self-care may be said to both empower and
disempower patients. The spatial distance these technologies enact allows
patients to avoid the direct medical gaze and disciplinary power that was the
focus on Foucault’s writings on the clinic. However, this medical gaze becomes
virtual and moves towards self-government, as patients are expected to turn the
gaze upon themselves and then report what they observe to their healthcare
providers. Not only has the clinic moved into the home, it has dispersed to every
possible spatial and temporal location. Not only are medical and health-related
data now mobile (Coopmans, 2006), but so are the bodies/devices that produce
these data.
Discourses of the digitised and digitally engaged patient may be viewed as part
of a neoliberal political orientation to patient care and preventive health.
They position lay people as ready and willing to actively engage in their own
healthcare and promote their own health, in the attempt to shift the burden of
such responsibilities from the state to the individual (Lupton, 1995, 1997a; Mort
et al, 2009; Veitch, 2010). Such discourses also participate in a more general
privileging of the measurable and the quantifiable in contemporary societies,
where collecting as much data as possible on patients and healthcare provision
underpins a more general effort on the part of governments and commercial
entities to gather what is often termed ‘big data’on populations via digital media
technologies to inform service delivery (Beer, 2009; Cheney-Lippold, 2011;
Ruppert, 2011).
In the context of the patient assemblage configured via discourses of digiti-
sation, individuals’knowledge of their bodies that can be provided by data
is privileged over the haptic sensations they feel from their bodies, and
represented as able to uncover hidden illness or disease that might otherwise not
be detected using phenomenological experiences of embodiment (Lupton, 2012,
2013). The ‘digital’is conflated as the ‘metric’, privileged for its objectivity and
the presumed insights it can provide into previously unknown dimensions of
patient experience and embodiment. Discourses on the digitised patient suggest
that order and control over what might otherwise be an unpredictable (because
unknowable or mysterious) body may be instituted via digital and metric know-
ledges. Data, metrics and algorithms are represented as clean, contained and
unemotional, far removed from the messy contingencies and uncertainties of the
Lupton
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body and its ills and the distressing or unsettling emotions associated with these.
Both patients and healthcare providers are implicated in these new algorithmic
assemblages (Cheney-Lippold, 2011), as lay people’s bodies and behaviours and
healthcare providers’quality of service and expertise are monitored, computed,
metricised and configured.
The research reviewed here has demonstrated that lay people may use digital
health technologies in diverse and sometimes contradictory or ambivalent ways.
It is not simply a matter of either taking up or rejecting these technologies: many
people move between these two positions. Some technologies are embraced on
some occasions, whereas others may be rejected or resisted. Their meanings and
uses are not stable but rather are subject to change and contestation, depending
on the context in which they are located and the other actors with which they
interact.
Self-care and self-management of one’s medical condition and the ‘empower-
ment’they are supposed to offer only go so far, however. The technologies
themselves play a structuring role in delimiting action on the part of patients.
Patients have not been consulted about the policies, design or use of the tech-
nologies they are given and are still in practice positioned as passive targets of
these technologies. While they are responsible for collecting the data on their
bodies that they transmit to healthcare providers, it is the latter who interpret and
use the data (Mort et al, 2009; Oudshoorn, 2011). Patients are still expected to
conform to healthcare providers’expectations and it is the providers who are
positioned as possessing the legitimate knowledge of their condition and how
best to treat it (Nicolini, 2007; Veitch, 2010).
Much remains to be investigated in relation to the interaction of concepts of
digital patient engagement and the politics of the data that are configured as part
of lay people’s interactions with digital health technologies. For example, what
types of subjects, bodies and relations (both to other humans and to objects) do
digital media technologies enact? How will the power relations of the medical
encounter be transformed (or not) via these technologies? How do the various
forms of digital data that are produced both as a by-product of people’s use of
digital health technologies and more deliberately as part of their participation in
blogs or patient support platforms interact with each other?
One intriguing direction for research in relation to the concept of the digitally
engaged patient is that which pursues investigation into the embodied and
affective dimension of digital technology use. As noted above, patients often
invest the medical encounter with emotion, particularly if they are suffering and
desperate for help. When the medical encounter is mediated via digital media
devices, emotion may be invested in the devices themselves as well as the social
relationships that are established via the devices between users and their
healthcare providers or with other patients. This issue of emotion can be
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reintroduced by exploring the ways in which lay people’s appropriation of digital
technologies involves both affective attachments to the material devices they are
using (such as their smartphones or wearable self-monitoring devices) and to the
other people with whom they are sharing their data or whose professional
services they are ranking.
Now, more than ever, as the new digital media technologies become ever
more mobile and wearable, as we carry them on our bodies throughout the
day or even throughout the night –indeed as some can now be swallowed or
stuck upon one’s skin as paper-thin patches –they are becoming part of us, part
of our bodies as prosthetics of the self, part of our identities as they store
more data about our experiences, our social relationships and encounters and
our bodily functioning (Lupton, 2012, 2013). These inquiries go beyond
a preoccupation with the question of whether technologies are used or not (as
is evident in the discourses of the ‘digitally engaged patient’) but how they are
used and actively incorporated into everyday life; how they are ‘remade’via
embodied use.
About the Author
Deborah Lupton is Senior Principal Research Fellow (Professor) in the
Department of Sociology and Social Policy, University of Sydney. She is the
author/co-author of 13 books and the editor of two others, the most recent of
which are Medicine as Culture, 3rd edition, Fat, Risk, 2nd edition, The Social
Worlds of the Unborn and The Unborn Human. Her current research focuses on
digital sociology and digital health technologies.
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