Intro
Consumer health technologies (CHTs) such as wearables, fitness and health mobile apps
and other devices, are commonly used by individuals in private settings to monitor
daily activities, as well as numerous physical and psychological parameters that can
be used, for instance, to monitor health issues. These CHTs are widely used
worldwide according to market research institutes, e.g., in the US in 2021, 59% of
the general population tracked steps, 42% athletic performance, and 37% heart
health, and the global CHT market is expected to expand.
1
Global health crises like the coronavirus disease 2019 (COVID-19) pandemic
may have even accelerated this trend,
2
as e.g., shown in Germany, where the number of users of health and fitness
apps increased 16% within two months in 2020.
3
Common parameters which are tracked with CHTs include heart rate, step count,
running pace, calories burned, food and drink intake, weight, stress level, sleep
patterns and mood level. 4 , 5
Furthermore, the development of diverse sensor technologies, such as electroencephalogram,
6
spectroscopy,
7
or breathing sensors,
8
which can be incorporated in CHTs, increase the possibilities for personal
monitoring. Despite the huge number of devices and apps on the free market and in
app stores, the market for certified health apps available via health insurance
companies (e.g., 12 health apps in Germany based on the Digital Health Care Act
9
) is a niche so far.
Although only a few CHTs have been tested for quality and their ability to deliver on
their health and well-being claims, CHTs, in general, are surrounded by promises of
benefits for healthcare systems and individuals: CHTs are supposed to foster better,
more efficient healthcare, based on ‘personalized healthcare’ model of targeted,
preventative and participatory healthcare,
10
and create fitter, happier, more productive individuals enabled through self-knowledge.
11
Moreover continuous and real-time monitoring of health parameters is seen as
essential for better management of the rising number of patients with chronic diseases.
12
Self-tracking may also take place outside of the institutionalized healthcare
system, e.g., in the quantified self-movement, and offer self-empowerment in
addition to prevention or self-optimization.
13
However, data breaches,
14
insufficient regulation, ambiguous evidence
15
to back up claims regarding health improvements, and critical studies
regarding the validity of data from CHTs are currently dampening expectations.
16
Regarding societal issues, critical commentators see the COVID-19 pandemic as
enabling ‘a public health intelligence revolution, where devices, apps and insights
are promoted as essential, from the individual to the state level’,
17
but point out the ambiguities with regard to surveillance, responsibilization
and commercial use of data, which push CHTs use. 18 , 19 This critique is well-aligned
with the focus of public discussion on data security and privacy issues.
20
The potential negative side effects of CHT use at the psycho-social level, such as
emotional distress, and a threatening decline of the solidarity principle in health
care due to insurance bonus programmes of dubious economic value,
21
have been pointed out in some studies exploring social and ethical issues and
public health. 22 , 23 However, in our view and according to other authors, these
issues are less in the spotlight of public discussion and research. 2 , 24 , 26 Furthermore, such research on
the ethical and societal aspects of CHTs refers to rather sparse empirical evidence
and proposes to conceptualize such unintended effects more precisely and better
document them.
23
Although systematic review articles of the growing amount of empirical
research have been published, and systematize the research base according to themes
on the user level, like motivations, reasons for continuance, and effects of CHT use,
27
they lack an ethical perspective. The question of interest here is how to
engage users with CHTs for sustained periods of time, assuming this is a good
indicator of (intended, positive) effectiveness,
27
but not whether there are non-intended, negative effects or who could be at
risk of experiencing them.
Addressing this research gap, the primary objective of this narrative review is to
assess the neglected negative side effects of CHT use and raise awareness of the
potential vulnerabilities of CHT users. Another objective is to systematize those
effects better and relate them to societal trends based on the (more) theoretical
literature on self-tracking. For this purpose, we use a user typology not only as a
tool to think about the ethical issues of CHT effects, especially regarding
individual or group-related vulnerabilities, 2 , 26 but also as a starting point
for investigating them more systematically. Such research is essential in order to
find measures for the protection of CHTs users from unintended harm, and to
counteract the widening of inequalities through digital health
technologies. 15 , 26 Our focus on the negative psycho-social effects, which to date
have been somewhat neglected (in both regulatory and ethical debates), does not mean
that we are not aware of the potential positive effects of CHT use for health and
wellbeing. We want to contribute to a nuanced view
28
on both the promising and the ‘dark’ side 25 , 29 of CHT use. What we will not
provide here is a review of the primary intended positive effects of CHT use, which
have been discussed in depth elsewhere for fitness trackers,
30
or of randomized controlled trials (RCTs) for specific health apps (for
examples see the DIGA catalogue
9
).
The paper is structured as follows: Following a description of the methodology, in
the first part of the results section we provide an overview of user typologies as
proposed in the literature and describe them with regard to commonalities and
differences. In the second part, we present empirical evidence for unintended
side-effects on the psycho-social level. In the third part, we introduce the concept
of vulnerabilities, and present empirical findings about the influence of
demographics (specifically, socio-economic status) on CHTs use. In the
discussion, we propose a new user typology based on reflections on the
presented material.
Methods
Aiming to gain an initial impression of the topic of CHT use and its facets, a
literature review was conducted from February to April 2021, following a narrative
review approach. 31 , 32 Narrative reviews are comprehensive narrative syntheses of
previously published information,
33
where findings relating to a topic are put into a broader perspective.
34
The aim is to summarize what has been written on a particular topic by giving
an overview of selected articles, rather than making generalizations based on what
was reviewed.
33
Thus, it provides a comprehensive background for understanding current
knowledge and highlighting the significance of new research.
35
A preliminary search of the literature was conducted in electronic databases such as
PubMed, Web of Science, Scopus and EBSCO, specifically Sportdiscus and the search
engine Google Scholar, with a view to identifying already published work
36
in the following thematic areas related to CHT: user types, unintended side
effects of use (including psycho-social effects) and societal trends. Only papers
published in English or German were included in the analysis. No restricted timeline
was imposed. Papers were excluded when there was no possibility to obtain the full
text, or when after abstract screening there was no connection to the abovementioned
thematic focus.
A narrative review is a more traditional form of literature review that has the
advantages of flexibility and appropriateness to inductive research and qualitative
research designs.
32
It permits a wider scope than systematic reviews, which are strategically focused.
32
The breadth of the search allows us to draw reasonable conclusions about the
general direction of the research field and point out research gaps in terms of the
number of studies available (e.g., that there is much more qualitative research with
heterogenous and small samples than quantitative research on representative
samples).
Results
In this first part of the results section, the ways of CHT use or CHT users are
categorized and described (user typologies) in the literature are summarized. In the
second part, we present empirical evidence for unintended side-effects on the social
and psychological levels, and relate them to the different societal drivers
identified in the literature. In the third part, we introduce the concept of
vulnerabilities, and present empirical findings about the influence of
socio-economic status on CHT use.
Five user typologies were identified in the literature review, as presented
and described in Table
1 . Gerhard and Hepp
37
describe ‘Enthusiasts’ and ‘Pragmatists’ as two different types of
CHT users. The former use CHTs in a more playful way, in communities rather
than alone, and with no fixed goals. The latter use of CHTs rather in
private settings, and have specific goals they want to achieve through
self-tracking, e.g., a certain fitness level or prevention of a certain
disease. Also, the range of CHTs used and the tracking parameters differ.
Pragmatists have a rather limited tracking repertoire in comparison to
Enthusiasts.
User typologies and distinguishing characteristics (practices,
motivations) of the user types as described by different
authors.
Maeyer and Markopolous differentiate ‘Social’, ‘Achiever’ and ‘Avid self-trackers’.
38
The Social self-tracker likes to share their data within a group, for
example on the platform of their device in order to attain reciprocal
stimulation and motivation for achieving mutual goals. A connection to
others is also important for the Achiever Self-tracker, who loves to compete
and pursue self-set goals. The Avid Self-Tracker aims for self-awareness and
a healthy lifestyle, and integrates self-tracking fully into their life;
they like to analyse data, up to the point of creating a digital
doppelganger or digital mirror through self-tracking.
Seshagiri et al. describe four types of CHT users.
40
The ‘Competitive Beginner’ starts fitness activities without a
specific aim, is looking for a competitive environment and desires social
confirmation. The ‘Passive Practitioner’ tries to include tracking with
little effort in their daily life due to domestic and job-related
responsibilities and thus prefers passive/automatic tracking, with focus on
daily activity, such as step count. The ‘Challenge Seeker’, who is already
physically active, is looking for a new way to improve and create a more
varied exercise regime. The ‘Active Reviver’ has stopped being physically
active and is looking for motivating feedback from CHTs and other physically
active persons.
Kupfer
39
differentiates between short- and long-term users, which she
associates with curiosity and pattern-seeking respectively, and also
identifies data-sharing users who have social goals like peer comparison and
self-representation. Two further user types aim to meet a specific
(health/fitness) goal or identify a (health) problem.
All three typologies make a distinction between more goal-oriented and more
self-sufficient CHT users , and identify the social aspect
as one important factor in discerning user types; the fourth typology
focuses on goal-oriented sportive CHT use, differentiating various degrees
of ambition. Selke et al.
2
, present a typology with a special focus on vulnerabilities with
regard to self-tracking. The authors distinguish social and digital
vulnerability, resulting in three vulnerable types (data vulnerable,
socially and data vulnerable, and socially vulnerable) and one competent
sovereign type (digital sovereignty) that uses CHTs self-determinedly.
The five studies presented above explicitly distinguish user ‘types’, but
many other scholars differentiate ways of using CHTs or underlying
motivations. Heyen
41
explicitly argues that it is difficult to categorize self-trackers
and that it might make more sense to typologize the ways CHTs are used (we
refer to this aspect in the following as ‘practices’), but other scholars do
not reflect further on the rationale for the chosen subject/aspect of
categorization. It is thus most often not clear whether the scholars
consider the use practices and motivations they distinguish as combinable
(e.g., Lupton
19
and Suh
42
) or rather mutually exclusive attributes, and whether individual
users are in a fixed user practice state, or transition through different
states (as described in Costa Figueiredo
43
). Table
2 summarizes the different practices and/or motivations for CHT
use found in the literature review.
Main characteristics or associated concepts of the different
practices of/motivations for consumer health technology (CHT) use,
according to different authors.
Motivations and aims which may be distinguished are fun/entertainment, and
performance improvement,
4
hedonic, utilitarian, and eudaemonic,
42
self-association, -design, -discipline, and -healing,
47
expertization
5
and empowerment.
52
As more uncommon motivations or aims, some athletes use fitness apps
as a means to pursue their ‘biographical project’ and (self-)identify as a
(professional) athlete, 46 , 53 or to reach ‘digital immortality’.
44
Heyen describes four stages of increasing active engagement and research
character: for fun/without concrete aims, monitoring and optimization, as
research project and development of own apps/measurement tools for tracking.
41
Some other studies differentiate use practices with regard to active
engagement (or lack of it), and inner and external drivers for tracking,
such as active/passive, 4 , 45 and physician
initiated/self-initiated. Costa Figueiredo et al. distinguish five types of
engagement with data in the special case of fertility tracking, which
includes both an action and an emotional component: positive, burdened,
obsessive, trapped and abandoning.
43
This typology is especially interesting with regard to our
objectives, as it points out negative side-effects, like guilt, stress and
dependence. Of similar relevance is that of Lupton, which focuses on the
(external) driving forces for CHT use and differentiates between private,
pushed, communal, imposed, or exploited self-tracking, referring to the
economic interests and drivers of self-tracking. In private self-tracking
the collected data is not shared and is used to improve and optimize
awareness and health. Pushed self-tracking is driven by a third party, e.
g., an employer or insurance companies. Communal self-tracking focuses on
being part of a community through sharing and comparing personal data via
social media and other platforms. Imposed self-tracking describes a practice
where individuals are required to use self-tracking solely for the benefit
of others. Exploited self-tracking describes the use of personal data by
others for their (commercial) benefit, for instance, market research.
19
Regarding these practices, Lupton highlights their intersection.
Private self-tracking may be combined with communal self-tracking and there
are blurred lines between imposed and pushed self-tracking. The typologies
of Pols et al.
48
and Milward et al.
49
describe the difference between tracking to gain understanding and
awareness and tracking to reach a certain goal (e.g., reduce alcohol
consumption).
Rather than deducing types of users from qualitative or quantitative data,
Yli-Kauhaluoma & Pantzar
50
pre-defined user categories according to regularity and intensity of
CHT use (inexperienced, experienced, or extreme self-trackers), and
described differences with regard to their problems with data accuracy and interpretation.
50
All these typologies and differentiations of use practices pick out either
one single aspect of CHT use to describe (e.g., kind of motivation, or
engagement), or several, e.g., Selke data handling and goals with regard to
health, and thus more or less reduce complexity. Meidert et al. and Herzog
et al. describe different user types in the form of fictional characters –
the personas – based on real data and observations (see Table 3 ). The
descriptions of the personas include factual descriptions such as
profession, age, gender and family status, but also aims, motivations,
concerns, skills, knowledge, practices, and negative and positive effects of
CHT use in a story-like format. They try to generalize, but also retain a
great amount of real-world complexity of CHT use and users.
Characteristics and unintended negative (-) and positive (+) consumer
health technologies (CHT) use effects on examples of personas, as
proposed by different authors.
Tracking health parameters has a long history, e.g., an insurance company
calculated ‘healthy’ norm values for body weight already in the 1860s, and in
the 1970s self-tracking of blood pressure gained popularity, as a means to
prevent disease but also to gain autonomy from health professionals.
46
The scale and pervasiveness of CHT use are however seen as a new
socio-technical arrangement,
46
provoking questions about the drivers of this development. Three societal
drivers of CHT use which are often discussed are Economization and
self-optimization , Datafication , and
Individualization .
While the positive effects of CHT use are often framed as a result of
technological design options and functionality/usability (e.g., how do
gamification elements motivate users most effectively
25
), negative side effects are often portrayed as a consequence of the
societal climate in which CHTs are used. For the purposes of this narrative
review, we wish to present this perspective in order to structure our findings
relating to the negative psycho-social side effects. In our discussion, however,
we will then attempt to arrive at a more user-centered way of looking at
negative side-effects, without neglecting the societal embeddedness of CHTs and
their users. To this end, we will use the concept of user types and draw on the
existing user typologies we presented above.
Economic aspects are seen as a major driver of CHT use, as there is a large and
growing market for CHTs and the data generated by them, 15 , 54 and CHTs
are seen as a solution for health care systems struggling with limited resources.
55
On the individual level, self-optimization can be seen as a form of
economization in neoliberal societies as well. 4 , 5 , 51
Besides better health (or self-optimization related e.g., to fitness, beauty or
work performance), the biggest promise of CHT use as an outcome is expertization
and empowerment. 41 , 52 , 56 The underlying hope is to lead to more efficient and
happier lives without being dependent on expert knowledge, which is doubted to
give credit to the individuality of one's own body.
46
Self-expertization is meant in the sense that it is not restricted to
passively gaining general knowledge about medical science, but actively
producing self-knowledge, and thus doing ‘personal science’. 41 , 57 Rising
health care costs are assumed to be an important inspiration for dissemination
of these promises, not only by CHT manufacturers, but also states and insurers,
and a neoliberal shift of responsibility to the individual is discussed
critically. 19 , 58 , 60 Lupton describes pushed, imposed or exploited tracking
modes, suggesting potential negative effects on CHT users arising from the
economic interests of other stakeholders.
Empirical research suggests that data collection and sharing is sometimes
experienced as unpaid patient work for industry,
61
while at the same time proposed as being for the common good.
59
Furthermore, CHT use may constantly remind the user of having a disease,
61
lead to feelings of guilt, stress or failure, and obsessive
self-optimizing behaviour, e.g., in the context of nutrition apps and eating
disorders or mood trackers. 43 , 62 , 64 In a study with patients
with chronic obstructive pulmonary disease, users of a step counter felt
stressful pressure to exercise, and had bad feelings about ‘losing steps’ when
not wearing their device.
65
Toner suggests developing ways of using CHTs in a manner that counteracts
the interests of other stakeholders, and repurposes CHTs for one's own true benefit,
29
while Vesnic-Alujevic et al. even suggest developing CHTs on one's own.
58
Quantified self (QS) is a movement depicted as proactively counteracting
the dominant data collection practices of powerful institutions and corporations,
66
pronouncing e.g., self-ownership and independent management of data
(e.g., Open Humans
67
). However, it is unclear which groups of CHT users and how many of them
see themselves as citizen- or patient-scientists or members of the QS community,
and for how many of them the promise of self-expertization and empowerment is
being fulfilled. Research indicates that there is even a gap between aspiration
and reality within the QS community
2
(p. 39). There is evidence that especially in certain groups, societal
pressure to optimise may lead to negative effects. e.g., exercise dependency is
exacerbated by CHT use in female users,
68
who are supposed to be influenced by specifically gendered expectations
(weight loss and self-discipline for the purposes of beauty).
69
Without sufficient guidance in economized health care systems, especially
on the quality criteria of non-certified apps,
15
there is a risk that false diagnoses may result in fear, 70 , 71 though we
found no empirical studies that report on this issue.
Datafication is a prerequisite for self-tracking with CHTs, which mostly work
with quantitative data measured via sensors. Datafication promises more exact
knowledge about body functions through continuous monitoring and comparisons
with others or norm values over time (knowledge through numbers
72
). It may also provide users with positive feelings of control,
73
much sought-after in insecure times, and to an unburdening of
responsibility, e.g., in the case of COVID-19 tracking apps
2
(p. 16/70). Many CHT users are, however, not very responsive to ‘naked
numbers’, but are attracted by aesthetics like visualizations of data 2(p
36) , and may personally contextualize data to give meaning to it.
48
Whatever form measurements and their representations take, a sociology of
quantification assumes that there is a reciprocal, reactive relationship between
data and social life.
74
One big risk and negative social effect seen in datafication is that it can lead
to a reductionist view of medicine and a devaluation or neglect of the human
experience and subjective feelings. 2 , 29 In the case of diabetes,
control of glucose levels is enabled through continuous monitoring and
calculation, using many different individual variables.
48
This may lead to a form of control obsession and cognitive overload, but
may also help users acquire a better sense of the correlation between their
behaviour and the blood glucose values.
75
The concern that CHT use can lead to a loss of personality aspects relevant to
identity, and a stressful feeling of being controlled by numbers, has been
reported in a study with elderly people.
76
Especially when CHTs become an integral part of users’ physical
self-understanding, it may lead to stress when recommended standards of physical
activity are not met, and a feeling of dependency.
65
Professional athletes, on the contrary, saw the practice of CHT use as an
important and accepted part of their identity.
53
Datafication may help some people in finding a ‘stable identity in a
liquid world’, raising questions about the extent of dependence CHT use may generate.
77
CHT use may also lead to negative emotions and self-perceptions, such as hatred,
and self-distrust, and hinder enjoyment of exercise and the
environment. 46 , 73 Confusion and doubt arise when there is a mismatch
between data and experiences Klicken oder tippen Sie hier, um Text einzugeben.
50
In the especially emotionally loaded case of fertility tracking,
transitioning through different stages of emotions about data, from excited, to
stressed and frustrated, to obsessed, has been observed.
43
Chronic heart patients may relate fitness tracker data directly to their
disease, with the result that they may experience anything from insight to
doubt, and from reassurement to anxiety.
78
CHTs may be designed as too reductionistic with regard to their concept of health
or disease, as e.g., judged for the case of endometriosis.
79
However, CHT use may also lead to an increased repertoire of
self-awareness, which Pols et al. describe as the ‘aesthetic-semiotic style’ of
self-tracking, and thus enable a more holistic understanding of one's health and well-being.
48
CHT use may also create awareness about problematic behaviours and health
problems. 73 , 80 Ethnographic studies have shown that CHT use can be a
practice of positively valued mindfulness and communicative/narrative aid, i.e.,
the exact opposite of ‘data fetishism’.
81
Independent of the question whether datafication via CHTs has positive or
negative effects in terms of meaning for users’ self-valuation, feelings and
knowledge, a risk is that if aims are not reflected carefully and a certain
distance is taken from the data, ‘good’ data can become an end in itself, and
result in a form of psychological dependency.
82
CHTs often claim to give personalized recommendations, such as individualized
training or nutritional guidance.
83
The wish for individualized CHTs is also stated by many users in various
studies, especially if the usage is connected with disease management or
multiple chronic conditions. 84 , 86 CHT use as a practice can
be both highly individualized, using a DIY (do-it-yourself) device,
87
and/or designing personal research projects in QS communities like Open Humans,
67
or rather ‘standardised’ with regard to the CHTs used, data collected,
and methods to interpret data (e.g., tracking step count).
Independent from this aspect of individuality with regard to CHT users’
technology choices and their related goals, CHT use can be practised more or
less communally. This aspect is reflected in several of the typologies we
found. 37 , 39 Communal CHT use takes place in interaction with a
community, such as a device manufacturer's forum, or a quantified self-group or
friends with whom data is shared for comparison and learning. The relevance and
meaning of one's own data is discussed, and motivation for CHT use is sought in
online communities.
58
The use of online communities was found to lead to significantly greater
engagement in physical activity in a cross-sectional study.
88
One explanation for this motivational effect of the community aspect is
related to individualization, as for some users exchanging and comparing data is
an important means to build up individuality: social identity, a concept closely
related to individualization, is defined by social relationships, and is also
formed by comparison with others, e.g., through self-tracking.
89
Social media in general have been a driver of individualization and its
strongest form, self-optimization, especially in generation Y, who grew up with
the internet.
89
Developers and marketers of CHTs attempt to create an ‘affective
atmosphere’ of community in users.
90
Referring to a claim by Lupton,
91
Ajana
92
writes that data sharing in the context of CHT use ‘appeals to a deeply
felt desire (…) to create social bonds and a sense of belonging’.
While we found no research specifically looking at the psycho-social implications
of CHT diversification and choice as such, one may assume that there are
differences in access to this means for individualization for financial and
social reasons. There may be social or patient groups with fewer opportunities
to compare with others due to time constraints or digital literacy limitations,
or less options to choose between CHTs, e.g., persons with paraplegia or amputations,
2
or rare diseases. The same may be true for access to communities. Senabre
Hidalgo et al.
93
studied the research ethos and social aspects of communality within a QS
community, showing that learning from others and in turn sharing knowledge
gained by CHT use is common. Whether these specialized QS communities are truly
‘solidaristic’ or rather exclusive has however been questioned.
94
Besides this access issue with its implications for health equity, the
communality aspect as such bears risks. Gamification as a design element of CHTs
and social media networks may have a synergistic effect for motivating users.
95
But social media and gamification mechanisms may also have a downside due
to addiction risks and social pressure.
96
Comparing performance with others via social media may have demotivating
effects with regard to engagement in health-related behaviours,
97
and be counter-productive also in mental health apps.
89
In a study with juvenile girls, the users felt that CHTs as such reduce
the social element of sports,
98
which might be another counteracting demotivational factor. Another
general pitfall of motivation for sports by technological means is that a
motivational dependency effect on the CHT was observed, which was stronger for
participants with low intrinsic motivation for physical activity.
82
Vulnerability is understood as an increased risk of harm 2(p 76) ,
arising from a combination of individual mental and physical constitution,
environmental factors and social context
2
(p.111). Herzog et al. propose an expansion of the traditional
understanding of vulnerability in medical ethics, which is focused on the
individual and the ability to give informed consent, to include also
vulnerability on a societal level and other individual dimensions, e.g.,
psycho-social dimensions.
26
This broader understanding allows identification of the ‘vulnerabilizing’
factors located in societal structures, like unequal socio-economic position,
and thus also the ethical dimension of CHT vulnerabilities from a (social)
justice perspective.
26
The question of which individual users or user types are most at risk of
experiencing negative side-effects can also be formulated as a question about
vulnerabilizing factors.
Socio-economic status is one such exemplary factor,
26
and there is some knowledge regarding its relation to (non-)use of CHTs
(see Grundy 2022 and references therein for details).
15
Not everyone may have the time and financial resources to invest in CHTs
and their use, or even engage with (online) communities like Quantified Self.
54
It is widely acknowledged that health inequalities are linked to
socio-economic status and that digital technology in health may exacerbate these
inequalities, either due to differences in digital literacy, use of these
technologies, or access to technology. 23 , 99 Numerous studies have
shown that individuals with a higher socio-economic status, i.e., income and
education, and better health, use CHTs more often. 38 , 61 , 100 , 105 This finding may be
explained with the existence of personal resources like digital literacy and
ownership of high-quality CHTs, and the motivation to lead a healthy lifestyle
in higher socio-economic groups.
100
Discussion
We will now shortly summarize our overview of the existing CHT user typologies, and
then discuss aspects of CHT use for a side-effect-sensitive typology. We will then
discuss the implications of psycho-social negative effects with regard to
vulnerabilities in more depth.
Taken together, most user typologies in the literature are based on the
motivations or practices of users. Few of them point to external driving forces
for individual CHT use, negative effects, or vulnerabilities of individual
users. The level of abstraction/differentiation of types differs considerably
between typologies and persona descriptions. The purpose for which they are
proposed also differs. Some typologies are tailored to/deduced from a very
specific user group, while others have the aspiration to capture a broader user
population. More abstract typologies may help to draw attention to one specific
aspect of CHT use, e.g., sportive ambitions, or the importance of social
elements. The persona typology helps us to think about social and ethical
consequences for specific groups of people.
26
Both may summarize empirically identified user groups,
5
which may be helpful for technology development and evaluation.
What is missing is a typology aimed at documenting all important aspects that may
influence the risk of side effects of CHT use. In the following, we propose such
a typology based on reflections on our two results sections. An overview of
negative side effects is given in Table 4 , and we will explain the
related typology dimensions/aspects in the following sections.
Overview of negative psycho-social side effects and their societal
frames, and the typology aspects chosen and deduced from the typologies
overview.
Hindering enjoyment of exercise and environment
29 , 46 , 73
dependence 43 , 65 , 77 , 82
feeling of being controlled by numbers
76
loss of intuitive body knowledge
29
frustration due to mismatch of data and
experience 43 , 50
anxiety and doubt
85
Reminder of disease
61
patient work
61
stress and negative self-appraisal/guilt/feeling
of failure 43 , 62 , 65
fears due to false self-diagnoses 70 , 71
• obsessive behaviour, exercise dependency
68
Motivational dependency and externalisation of
motivation
82
diminishing „real ‘social interactions
98
demotivating effect of competition
97
counter-productive comparisons in the case of
mental health
89
social pressure
96
risk of addiction/ excessive exercise
96
First, we will consider the concept of vulnerabilities and how our user typology
may help to reflect on them.
Selke et al. 2(p 68) describe a typology of CHT users based on data and
social vulnerability. The first is defined as a digital dependency and/or
acceptance of a loss of data protection, while social vulnerability may be
either an exclusion from CHT use (due to, e.g., disability or economic factors),
or an externally pushed or controlled CHT use, e.g., in the work place.
2
Selke et al. thus make a link between potential negative effects in
general (risk of harm) of CHT use, and personal and societal factors, through a
user typology based on the concept of vulnerability. While we will base our
typology on aspects of the societal drivers we identified, we also include the
concept of vulnerability in our typology, and want to point out potential
‘vulnerabilizing’ factors for each type.
Besides identifying risks for known vulnerable/discriminated groups, Herzog, Wild
and Kellmeyer
26
point out that CHTs pose the risk of creating vulnerabilities in
individuals who normally would not fall under the category of ‘vulnerable’, such
as healthy and wealthy individuals who become addicted to CHT use due to
psychological predispositions and social context. Further ‘vulnerabilizing’
factors may be gender, social context, disease, economic situation,
knowledge/education, and psychological predispositions. Further research is
needed to explore whether these factors could lead to an increased risk of
non-voluntary use, non-use, or negative side-effects of CHTs.
Current research suggests that certain disadvantaged demographics use CHTs less,
which leads to a widening of inequalities.
15
However, not so much is known in detail about why certain demographics do
not use CHTs for sustained time frames. There may be financial barriers, digital
literacy may play a role, or apps may not be designed with disadvantaged groups
in mind, targeting instead the wealthy and healthy.
15
This may also imply that disadvantaged groups try out CHTs but then
experience negative effects that make them stop using them again. Alternatively,
they may use CHTs despite the negative side effects (of which they may or may
not be aware). For now, one can only speculate about the diverse factors of
vulnerability apart from socio-economic status, as we are doing in the
discussion now. Reflecting vulnerabilities may also take the form of writing
down the dimensions/aspects of the typology we propose and thinking about
potential risks in interaction with personal factors (like we did for two
aspects in Figure 1 ).
We will describe the content of this Figure in detail in the following section.
Individualization and the related level of social interaction and
individualization of technology
Individualization and the related level of social interaction and
individualization of technology
User types related to the societal trend of individualization, with
examples of vulnerabilities potentially leading to a higher risk for
negative effects and/or non-voluntary use of CHTs: Abbreviations for the
vulnerabilities: D, SC, E, PE, K. D: disease; SC: social context; E:
economic; PE: psychological/emotional; K: knowledge/digital
literacy.
Current research suggests that there is a complex interplay of individualization
and social interactions via CHTs with the motivation to use CHTs and some
potential side effects. There is evidence of (motivational) dependency on CHTs
and negative emotional effects of social comparisons (as summarized in Table 4 ). Two key
aspects of a typology of users are, thus, individualized technology and social
interaction via CHTs. Future sociological and empirical ethics research could
e.g., investigate the psycho-social effects of comparisons with standard values,
especially for individuals in special circumstances, like wearing limb
prostheses (see upper-right square in Figure 1 ). Responsible developers of
CHTs should take account of individuals with special needs but limited financial
resources, who cannot benefit much from common affordable mass technology (see
right-down square in Figure
1 ). (Algorithm-based) individualization of technology and social
interaction, although highly valued by users and a motivating factor, may bear a
risk for patients with a lack of health literacy and tech enthusiasm (see
upper-left square in Figure
1 ). Complex individualized technology may also be a risk for users
when used without any guidance (which may, but does not have to come from a user
community). Economization – aims and self-determinedness of CHT use The evidence for feelings of failure or guilt with regard to CHT use can
be interpreted as responsibilization in a context of economization of healthcare
systems and the trend towards self-optimization, which are often described as
key drivers for CHT use. There are two key defining characteristics of CHT use
which are discussed with regard to the societal context of economization, and
which are also evident in some user typologies. 2 , 19 These are self- vs.
other-determinedness, and health-oriented (with the aim to heal, monitor or
diagnose) vs. optimizing (without a specific end, oriented towards fitness or
beauty ideals).
Economization – aims and self-determinedness of CHT use
While this typology does not offer a nuanced differentiation between levels of
external (societal) pressure, like the one Lupton proposes,
19
the second dimension we add draws attention to the intersection of two
aspects of CHT use. A hypothesis that could serve as a starting point for
further research is, that the different types may be at more or less risk of
experiencing the related psycho-social side-effects. For example, users pushed
by social norms to self-optimize may develop a habit to negatively appraise
themselves, based on data that shows they did not reach externally defined goals
like a certain step count. Financial pressure may also lead to
other-determinedness of CHT use, like in insurance bonus programmes, or in cases
where CHTs are used as a substitute when there is a scarcity of physicians.
While other-determinedness has, not without reason, a clear negative
connotation, it may be neither a sufficient nor a necessary condition for risks.
Certain personal characteristics of users may interact with CHT use aspects and
create vulnerabilities. For example, false expectations about the capabilities
of CHTs may lead to fear due to false diagnoses in not-so-digitally literate
patients, although or even because they use CHTs in a self-determined manner
(without guidance from professionals). Datafication and the related epistemic and emotional attitude towards
self-tracked data Taken together, the described empirical studies in our literature sample
show a nuanced picture with regard to CHT users’ feelings
towards and personal meanings of their
data and the effect datafication has on their subjective experiences and
understanding of health. A polarized perspective on datafication as creating
control and knowledge at the cost of, or at least risking, a de-valuation of
subjective experience is not realistic. People may self-identify more or less
with their CHT data, which can have both negative and positive implications.
From a more ‘rational’ or distanced perspective on data, datafication is simply
a means to objectively validate hypotheses about the body and change
behaviour. 48 , 52 From a more ‘emotional’ perspective, when users
identify to a great extent with their data, this may have implications for CHT
users’ self-valuation and feelings while doing physical exercise, or even their
capabilities to sense bodily aspects. While some users evaluate a reductionist
approach (e.g., of self-tracking apps for endometriosis
79
) negatively, others may welcome reduced complexity, e.g., the generalized
recommendation to take 10,000 steps every day to stay healthy.
Datafication and the related epistemic and emotional attitude towards
self-tracked data
Based on this complex picture, we propose two aspects based on the affective and
personal relation to one's own data (distanced-rational vs.
identifying-emotional) and the relevance of data vs. subjective experience for
understanding of health (reductionist vs. holistic). The emotional-reductionist
type and the emotional-holistic type lack an emotional distance from their data,
but differ in how significant they deem the data as health or fitness
indicators. The other two types are the rational-reductionist and the
rational-holistic types, who both detach from their data, but differ in how
significant they find the data, or rather trust their subjective experience. One
may also describe that difference in terms of whether data is rather used
instrumentally, to reach a specific goal like step count per day, or rather to
gain better understanding and awareness.
These user types bear some resemblance to those described by Costa Figueiredo et
al. and Yli-Kauhaluoma and Pantzar, as well as Pols et al. and Milward et al.
due to their focus on emotions towards data and the relation of experience and
data. However, the combination with the aspect of the understanding of health is
new and may provide a fruitful new perspective on user types and risks. For
example, one could speculate that persons with a very rational attitude and
holistic understanding of health may not be attracted by the promise of
datafication, or at the least might be irritated by far-reaching claims and
interpretations of data, and consequently could be reluctant to use CHTs.
Persons open to a reductionist understanding of health combined with an
emotional relationship with their data might be enabled to feel in control by
tracking certain data, but also at higher risk of distress or addiction.
Psychological aspects, like how anxious a person is in general when it comes to
health, or any state of emotional insecurity, could obviously play a big role
with regard to these risks, and has to be taken into account as a
vulnerabilizing factor. Health literacy and digital literacy are further
personal aspects that may influence evaluations of the meaning and quality of
data.
Conclusions
CHT use and its effects have to be understood as a complex socio-technical system
in which the context, societal trends, technology, and the user interact, and
the (medical, social, psychological, well-being) outcome is a result of this
interaction. Societal trends like data commercialization or health care
economization are often taken as the backdrop to critical accounts of CHT use.
Furthermore, the technological design and functionality perspective is often
used to research CHT user engagement, as a proxy for effectiveness. By contrast,
the individual characteristics of users themselves are rarely the focus of CHT
effect research. If anything, the correlation between demographic
characteristics or socio-economic background and non-use is studied.
CHT typologies are different in that they focus on the users and their diverse
use practices. However, most existing CHT user typologies are related to
motivations for and practices of CHT use, but do not draw a line distinguishing
these from likely outcome differences for the user types. This limits their
usefulness when it comes to reflecting on policy and ethics. There is limited
but not negligible evidence of the potential negative side effects of CHT use on
a psycho-social level. The aim of our suggested typology is thus to document
aspects of CHT technology, use and users which are more relatable to these
effects. This is based on how users identify with and use their self-tracked
data, their attitude toward new technology and social interactions via CHTs, as
well as the purpose and self-determinedness of CHT use.
The typology we propose is relatively generic, but may also be a starting point
for thinking about typologies for certain specific (groups of) CHTs. As an
example, we found and described in the results a typology of users of an alcohol
consumption reduction app.
49
The authors concluded that future app versions could be tailored to the
different types of users. However, they used essentially one dimension of our
typology (aim-oriented vs. tracking/awareness-raising), and the third type is
the (initially enthusiastic) non-user. The question we would raise is what makes
the non-users stop using the CHT after a short time (and consequently, not
benefit from it). One hypothesis could be that it might be related to other
typology dimensions we propose, and the related negative effects CHT use might
have.
Regarding future research, our typology may thus serve as a starting point for
more systematic sociological and empirical ethics research on CHT use. This
entails some challenges, however. The aspects of CHT use which define the user
types would have to be objectively measured in qualitative and quantitative
studies in order to establish more than anecdotal empirical evidence of the
existence and incidence of different user types, and the correlations with
negative effects. For example, the correlation between the psychological
characteristics of users and their risk of addiction and overuse may be
elucidated in quantitative studies. So far, there have been few attempts to
measure the attitudes and characteristics of users with psychometric scales,
like that of Kupfer.
39
An even more detailed real-world assessment of the negative consequences
of CHT use in correlation with vulnerability factors (such as socio-demographic
characteristics, gender, age, health status, education, psychological
predisposition) would also allow specific support and countermeasures to be
developed in terms of CHT design or education and support. CHT developers may
add self-reflection tools for vulnerable user groups, counteracting e.g., the
risks of adhering to stressful or even health-endangering excessive weight-loss
behaviours.
RCTs are already mandatory in Germany for health apps to obtain formal
certification (as DIGA) and be reimbursed. To date, these studies have often
lacked control of the multitude of contextual factors which may affect CHT effects.
23
It is a challenge to evaluate the effectiveness of medical products in
general, as these are often more complex than pharmaceuticals and require
real-world evidence.
106
Regulation, user guidance approaches, and standards
107
are more technology-centered and do not take into account the vast
diversity of users in terms of demographics and their way of using CHTs in
real-life settings. There is a tendency to focus on the clinical area and assume
a controlled setting when the safety of CHTs is being discussed. 108 , 109 Side
effects in real-world settings may be neglected with this approach. More
knowledge about the diversity of users may thus be key to generate robust
evidence of the quality and effectiveness of CHTs and enable regulation
downstream.
A more direct and upstream approach to mitigating potential negative effects
could be participative development of CHTs, involving diverse user types and
including minority and disadvantaged groups. 15 , 110 To give just two very
compelling examples, fitness apps may be developed for people with paraplegia,
as they are excluded by current fitness apps both in terms of the exercises they
propose and the quantitative activity goals they predefine.
111
In a participatory study with male workers, the design and functionality
requirements for mental health apps were studied in order to find ways to engage
this group of people that very often see mental disorders as a stigma.
112
Concerted efforts by researchers, regulators and developers of CHTs will be
necessary to achieve a widespread understanding of quality issues and to raise
awareness about the potentially ambiguous effects of these devices. Ultimately,
the aim should be to enable every user to make informed choices about personally
beneficial CHT, or about whether to reject CHT.
By selecting an explorative narrative literature review as the methodology, the
authors are aware that, due to the non-systematic literature review, some
studies focusing on the negative (and positive) psycho-social effects of CHTs
may not have been included in our review. Furthermore, our discussion includes
an element of speculation regarding the correlation between demographics and
personal factors of CHTs users, user types, and negative side-effects/risks. Our
study should therefore be considered as a point of departure for future, more
systematic quantitative and qualitative research and empirically grounded
ethics.
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