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Any evaluation of the communication and/or user-experience design Indexing a similar hopefulness in the transformative potential
of wearables ought to recognize both of these broad categories as of ehealth technologies and practices, the Patient Protection and
important test cases. As of the fourth quarter of 2016, Fitbit was the Affordable Care Act (2010) included several phases of designing
market leader for consumer wearable devices (IDC, 2017). Though and implementing electronic health records (EHRs) as a part of
Philips’ DreamMapper does not share the brand recognition of what it called “delivery system reform,” which was meant to “help
Fitbit, sleep apnea sufferers represent a vibrant, self-monitoring physicians, clinicians, and hospitals to deliver better care, smarter
community who interact with and troubleshoot their devices spending, and healthier people” (U.S. Department of Health &
through open-source software like SleepyHead (Watkins, 2011). Human Services, 2015). As a result of this initiative, between 2001
The analysis here is of a limited sample, but these choices have the and 2013, the percentage of U.S. physicians using EHRs increased
benefit of being representative of both categories of wearables. from 18% to 78%, and “94% of hospitals now report using certified
EHRs” (Burwell, 2015). By 2018, Patrick Conway, CMS deputy
The prominence of individualized medical technologies (many of administrator for innovation and quality and chief medical officer,
them wearable, like the Fitbit and CPAP machines) is transforming reports that the agency hopes these rules will “move us beyond the
expectations for the ethical role of individual “biocitizens.” There staged approach of ‘meaningful use’ and focus on broader delivery
are many uses of the term “biocitizen,” but here we refer to that system reform” (U.S. Department of Health & Human Services,
proposed by Swan (2012) to identify a person who dutifully gathers 2015). Most recently, the Office of the National Coordinator for
information about their body and then shares that data with others Health Information Technology (ONC) has been incentivizing
to engage in “proactive health self-management” (p. 108). As both those working on health-related apps to “connect and accelerate”
consumer wearables and wearable medical devices have become (ONC, 2016) a FHIR (Fast Healthcare Interoperability Resources,
more prevalent, expectations that we use these devices to track pronounced “fire”) App Ecosystem, which is the standard
and monitor our bodily states in order to be responsible, ethical for exchanging healthcare information electronically (FHIR
biocitizens have also intensified. This is just one part of what Gouge Infrastructure Work Group, 2015). The primary goals of the FHIR
(forthcoming) identifies as Compliance 2.0: the expectation that in standard are adaptability and connectivity: “to leverage existing
order to be ethical, productive healthcare participants and deserving logical and theoretical models to provide a consistent, easy to
of care and support, individuals in the patient role must proactively implement, and rigorous mechanism for exchanging data between
address both potential and existing disease issues, accepting their healthcare applications” in order to “simplify implementation
role as “at risk,” medicalized subjects. As with other forms of without sacrificing information integrity” (FHIR Infrastructure
medical compliance, this expectation sutures over other critical Work Group, 2015).
issues, obfuscating rather than illuminating how design processes
can participate in privileging and furthering ableist assumptions Some critics have challenged what they see as an uncritical emphasis
about issues of access, adaptability, and iterability. on “information integrity” as well as the rhetoric of empowerment
that often accompanies claims about the transformative potential
of EHRs. Kopelson (2009) has argued that even an “empowered
patient” armed with carefully-collated information risks reinforcing
medicine’s conventional power structure: “Self-reliance and
responsibilization function on behalf of the medical power structure
Communication Design Quarterly 5.2 2017 41
not only by constituting and then incorporating only the fittest of counts as valid and valuable design approaches. To date, ehealth
subjects into that structure, thereby keeping the unfit unseen, but by design has tended to emphasize traditional usability values, like
constituting the unfit as at fault for being so, thereby keeping the simplifying interaction and content (Lazard & Mackert, 2015, p. 26).
power structure itself un-interrogated” (Kopelson, 2009, p. 388). In their study of ehealth design, Lazard and Mackert (2015) argue
Segal (2009) has criticized an overemphasis on new sources of that design principles—including web aesthetics, visual complexity,
medical knowledge (e.g., websites that provide information about affordances, prototypicality, and persuasive imagery—can help
symptoms and treatments), an emphasis that too often comes at the reach audiences with low health literacies more effectively by
expense of more nuanced consideration of the knowledge seeker. strengthening attention, processing, and evaluation. Implementing
In particular, Segal argued that “empowerment,” in this context, best design practices can not only facilitate comprehension and
imagines an ehealth user who is calm, logical, and collected. retention, in other words, but improve access to some of the most
However, in practice, ehealth users are frequently anxious, nervous, vulnerable populations.
and uncertain about their health (Segal, 2009, p. 363). Rather
Universal Design (UD) works from a related premise: products should
than transforming and empowering conversations about care and
be designed for the widest possible audience from the beginning of
improving accessibility and adaptability of health data, ehealth may
a project rather than as an afterthought or retrofit. Although UD is
simply reify extant roles and scripts for both patients and healthcare
an outgrowth of the disability rights movement, some have been
professionals. These results may be exacerbated by the twin
critical of its ethical progressivism. These critics have argued that
developments of electronic health records and the copious amounts
it is a “problem-solving paradigm” that emphasizes “technological
of personal data produced by wearables (and the accompanying
fixes” at the expense of socio-political activism (Imrie, 2012).
expectations this data places on wearers).
Hamraie (2013) considers Karen Barad’s (2007) discussion of
There are studies of ehealth exchanges, however, that pay attention diffraction to argue that UD highlights the tangled, diffractive
to the ways that users develop and interact with knowledge nature of being, meaning, and ethics, noting that it highlights how
communities and the ways that knowledge is generated by these things make meaning and how bodies become included or excluded
communities. These studies do more than reinforce and locate users in that meaning. Following from this, we might consider the ways
along a simple continuum of empowerment and disempowerment. that diffraction—the visible effect of interference that matters (in
In her study of multimodal health texts, for example, Bellwoar both senses of the word)—might be understood as rejecting what
(2012) argues that usability studies have misunderstood how Bellwoar (2012) has called an “already-made world” and, instead,
people construct medical knowledge. Usability studies are meant recognizing that users inevitably interact with, transform, and
to improve specific technologies, but they frequently overlook how create their own worlds (Bellwoar, 2012, p. 343). For this reason,
users “chain” texts together—drawing knowledge not only from as we demonstrate in our analysis, the concept of diffraction might
official medical leaflets and conversations with doctors but also be a useful reminder to take seriously the complex ways that users,
from online forums, movies and television, friends and family (not designed objects, and environments are mutually transforming and
unlike Spinuzzi’s [2003] genre ecologies). Bellwoar writes, impactful.
this examination of already-made worlds is not enough In spite of growing recognition of the importance of UD principles
to understand how people are using products because in communication design scholarship, the design of health
it assumes that people intend to inhabit already-made technologies is typically a top-down affair—top down is a term
worlds, when in fact they intend to remake their own frequently used in discussions of grouping and classification,
worlds using the technologies along with the other official denoting categorization schemes established with little or no user
and nonofficial texts and professional and nonprofessional input or flexibility (cf. Bruns, 2008). Here, we use the term to evoke
people whom they tie with those technologies. (Bellwoar, this all-too-common and sometimes uncritical prioritizing of design
2012, p. 343) goals and processes and, returning to compliance-related concerns,
to recall the ways in which this approach can be used indirectly as
This “remaking” with ehealth technologies provides an opportunity
a mechanism of control—not just of designed processes but of the
for user-centered research and design to attend to—and ultimately
people who participate in them. Such top-down design approaches
learn from—the complex and complicated methods by which users
are incompatible with more progressive design principles.
make knowledge and apply what is learned to the design process.
Perhaps responding to this, Ito and Howe (building on Ito’s work
Such responses cannot be static, but are iterable, as developments
at MIT’s Media Lab) have proposed nine principles that, in the
in these communities feed into ever-changing innovation. In the
context of a discussion about wearable technologies in health and
case of medical wearables, such a focus is arguably more critical,
medicine, include some priorities that might sound a bit cavalier:
as it must consider how users access and control their own health
in particular, “risk over safety,” “systems over objects,” “resilience
data and how that data can be adapted to emerging situations and
over strength,” and “disobedience over compliance” (Ito & Howe,
to facilitate user-supported outcomes. It must not simply serve
2016). Indeed, the impulse towards conservatism in design and the
the self-reporting and compliance expectations of the biocitizen
desire to control processes often comes from the fact that in health
mandate that have intensified with the emergence of monitoring
and medicine, more so perhaps than many other design and use
technologies like health wearables.
contexts, the stakes can literally be life or death, and this can lead
those in positions of responsibility—or those who hope to sell new
UNIVERSAL DESIGN technologies to people with such responsibility—to favor strategies
The recent boom in wearable technologies has led to these devices that privilege control and predictability.
possessing increasingly broader (quantity of functions) and deeper
(quality and complexity of functions) capacities. These changes
offer communication design scholars opportunities to rethink what
and (7) Elicit feedback from patients” (p. 1). Although these steps extend to underserved populations (Teston, 2016). We cannot hope
might be helpful for providers who wish to thoughtfully introduce to address all issues of access and compliance addressed by the role
medical apps into their practices, collectively, the parts of this of wearables in healthcare and the changing relationships between
metric rely on a traditional usability model that works within caregivers and those receiving care. However, we will focus on
closed-systems and predetermined uses. Such an approach, as those factors of communication design that affect accessibility,
Rivers and Söderlund (2016) argued, can limit innovation because adaptability, and iterability.
it fails to capture the unintended uses and relations among objects,
users, and environments. That is, any app designed following a Recognizing the value of the design modifications proposed
process such as that outlined by Boudreaux et al. (2014) would be by Dolmage (2014) and the diffractive potential afforded by a
focused on current trends in medical research regarding diagnosis speculative usability add-on to traditional usability approaches
and treatment. It would be modeled on existing apps and those proposed by Rivers and Söderlund (2016), we suggest these
features identified as beneficial (or not) in reviews and ratings, as criteria for evaluating (and ultimately designing) the interfaces
well as those that are popular among professionals, providing little of wearable health applications. Based on versions of Dolmage’s
room for integrating—or even recognizing—the diffractive and (2014) vectors, we propose that accessibility, adaptability, and
speculative uses we have drawn attention to here. iterability be the focus of and priorities for evaluation: The design
of wearables and their software interfaces should be fully accessible
Though no single part of this process is negative in and of itself, to patients; data produced by wearables and other interface features
as a whole, such a design process would privilege and reinforce should be adaptable for user needs and innovation; and this data, in
existing ideas of what wearables in health and medicine can (and both use and access, should be portable and sustainably supported
should) do, emphasizing the users’ role as ethical biocitizens and for a range of patients. We see these criteria not as being linear
minimizing the exploration of uses that exceed their original design (to be attended to in sequence), but as an interconnected matrix of
and, subsequently, the new opportunities for care made possible concerns. In contrast to evaluative criteria like Boudreaux et al.’s
by these emerging technologies. Our concern is that perpetuating (2014), we argue that health apps should include some mechanisms
current ehealth paradigms with wearables has the potential to that allow users to create bottom-up data and health monitoring
exacerbate, justify, or reinforce existing errors or inequalities in experiences.
care (cf. O’Neil, 2016) because an app designed according to this
process would likely be one that uncritically adhered to conventional Although different use cases—or different wearables—might
ideas of patient compliance (for example, that the ethical role of the respond to these priorities differently, because wearables are
patient is to follow agreed upon or accepted guidelines for care, to designed primarily to produce data about bodies and connect that
either treat or prevent illness) and closed, top-down understandings data with other individuals and systems, our proposed criteria
of the categories that are used in these apps to define both patients’ account for the handling of data and connectivity of wearables
bodies and care. across these three principles. Table 1 contains a series of questions
designed to explore these criteria. This two-dimensional approach
Such a concern is made more pressing by the fact that the volume to the analysis of health wearable ecosystems allows us to take into
of data collected by wearables on individuals and their health account both the usability of these ecosystems and their openness
(“Health Wearables,” 2014) is growing exponentially, and this to speculative, diffractively-productive uses.
growth ought to make us concerned about how that data will be
used (Wilbanks & Topol, 2016), how benefits from this data can be These criteria address those ways in which wearable devices offer
best achieved (Patel, Asch, & Volpp, 2015), and how these benefits new opportunities for engaging in usability-related questions
Adaptability ● Users cannot add their own data ● Users have limited ability to integrate
categories, edit existing data, or delete data with EHRs.
some data categories; erroneous data
can be re-categorized.
● Users can input data manually for those
categories that aren’t automatically
tracked or log exercise when tracker
wasn’t worn.
Iterability ● Users can store their own copies of ● Users can connect with other online
their data, but can only export 31 days systems, but the extent to which user
of activity at a time. feedback informs the design process is
not clear.
export data with the system. It is not clear how user adaptations Accessibility
with these outside entities affect Fitbit’s design practices. Table 2 Data. Users can access the data, either through the app itself or
summarizes this analysis. the connected web interface, by selecting the category (mask fit,
hours used, AHI) and the date, but they do not have the ability
DREAMMAPPER to adjust the interface in any way. For example, users cannot
Sleep apnea is characterized by an individual’s breathing being turn off data collection because, according to DreamMapper’s
interrupted during sleep. This condition can be serious, leading to privacy policy, turning off data collection undermines the ability
an oxygen deficiency in the afflicted person and contributing to a of the app to perform as intended: “The DreamMapper application
number of secondary problems such as high blood pressure, heart may collect information automatically, and it will not function
problems, and depression (NHLBI, 2012). Some cases of sleep correctly if it cannot receive the information requested” (Philips
apnea are treated with devices that help to regulate oxygen intake. Respironics, 2015). Securing data relies on physically securing the
These devices, CPAP (continuous positive airway pressure) and machine or the related SD or SmartCard, and users cannot create
BiPAP (bi-level positive airway pressure) machines, connect with a DreamMapper account without identifying their device’s serial
users using nose plugs or masks that cover either just the nose or number. Though the security of the data on the user’s SmartCard
or SD card is not clarified by supporting documentation, there is
both the nose and mouth (Virk & Kotecha, 2016).
reason to think that this data is not encrypted. For example, the
The DreamMapper app works with both CPAP and BiPAP open source apnea analysis software SleepyHead claims to be
machines, harvesting data from the machines in order to track compatible with some Philips devices (Watkins, 2011). Logging in
mask fit, the number of hours the device was used, and the apnea- to DreamMapper is managed with a username/password and does
hypopnea index (AHI). The AHI represents the incidences of no not support two-step authentication. DreamMapper’s software
breathing (apneas) or shallow breathing (hypopneas) that occur works with a system commonly used by providers, EncorePro 2,
during sleep. Users of DreamMapper can set goals (including and the associated documentation does not address data security
consecutive days of use and mask fit percentages), complete for the app. EncorePro2 is, however, described as being compliant
questionnaires on motivation and feelings, set reminders to clean with HIPAA standards (Philips Respironics, n.d.-a), and providers
their machine’s tubing or replace filters, and watch informational can access data by downloading it from the user’s device via an
and instructional videos on sleep apnea (Koninklijke Philips N.V., SD card or SmartCard to the provider system or syncing with the
2016). The DreamMapper platform is designed to be paired with user’s device via an optional wireless modem (Philips Respironics,
other members of the “Dream Family,” including “DreamWear” n.d.-b). The DreamMapper data does not sync with the provider’s
masks and the “DreamStation” CPAP machine. The promotional system wirelessly.
materials for the family emphasize that the machines and devices Connectivity. DreamMapper does not have messaging or friending
are “patient-driven,” “user-friendly,” comfortable, and customizable capabilities. The software comes with links to videos and other
(Philips Respironics, n.d.). information about apnea and CPAP and BiPAP devices and is
46 Communication Design Quarterly 5.2 2017
Table 3. Summary of DreamMapper analysis
Data Connectivity
Accessibility ● Users can toggle between three main ● Users cannot contact others in the app.
categories of data collection but cannot
● Providers can upload information
customize the interface.
from machine manually via SD card or
● Users cannot turn off data collection. SmartCard or wirelessly via a modem.
Data from a CPAP device can either be Many interactions are handled through
uploaded to the software by transferring a smart-card that is programmed by
it to a computer via an SD card or to a the provider and uploaded to users’
mobile device via an attached Bluetooth devices.
module.
● Data gathered from users’ devices is
● The DreamMapper documentation does synced via the Web.
not address data security. Logging in to
the system is managed with a username/
password.
Adaptability ● Users cannot add or edit data or ● Users can only pair one CPAP machine
categories. to one mobile device via Bluetooth.
● Data cannot be added manually.
Iterability ● There is no official support for exporting ● No official support for connecting with
data from DreamMapper. outside services.
● Users can access data from SD cards.
advertised as reducing the time patients and providers must interact integrating it with third party software like SleepyHead (Watkins,
troubleshooting the machines (Philips Respironics, n.d.-a). Many 2011). Further, there is no specific support for accessing data via
interactions are handled through a smart-card that is programmed third party software.
by the provider and uploaded to users’ devices (Philips Respironics,
n.d.-b). Data gathered from users’ devices is synced via the
Web. Philips claims in its privacy policy that any data from the DISCUSSION
DreamMapper application may be shared “if and only to the extent Because software and hardware platforms like that of the Fitbit
necessary” with employees, including external vendors, “in the and DreamMapper are in constant flux, as software updates and
context of providing the application to you” (Philips Respironics, new hardware become available, analyses must also be flexible
2015). Though the language of this policy is vague, Philips seems and, ultimately, provisional. In other words, rather than delivering
to be suggesting that any data collected and/or shared will be used a once-and-for-all assessment, this analysis might be thought of as
to tailor the application to individual needs. descriptive of users’ experience at specific points in time. Accounting
for this, we can productively speculate about the openness of a system
Adaptability to diffractive influences and, in so doing, draw attention to the as-yet-
Data. A user’s CPAP data is uploaded to DreamMapper either by unexplored potential in the UX design of specific wearable devices.
transferring it via an SD card, the Bluetooth module, or attached We can, in other words, pay attention to the data in a way that might
modem (Philips Respironics, n.d.-c). Although users can toggle enhance the speculative usability and universal design capabilities of
between three main categories—mask fit, hours used, and AHI— wearables and avoid the biocitizen mandate.
they cannot add data categories, edit data, or manually enter data.
According to the DreamMapper privacy policy, users who want to It might not be surprising to find that the results of our analyses point
delete or change data should contact their healthcare provider or to closed-system tendencies for medically-oriented wearables—
Philips directly (Philips Respironics, 2015). since, for example, DreamMapper’s context of use is one with some
serious concerns about well-being and privacy were the device
Connectivity. Users can only pair one CPAP machine to one mobile ecosystem compromised in any way. However, given Fitbit’s much
device via Bluetooth. If the user is using the DreamStation CPAP broader user base, customization of its software is quite constrained
machine, however, the user can use its SD card to share data with regarding what categories of data can be tracked, what data can be
others, including healthcare professionals. Users can only use the edited or deleted, and how data can be exported from the system.
DreamMapper platform with six Philips CPAP devices and three This is despite the fact that it allows for a wide range of connectivity
Philips BiPAP devices. Devices from other manufacturers are not options for users relative to DreamMapper, providing them with
compatible with it. While DreamMapper does not integrate with flexibility in how they access data from third party applications and
EHRs, such connection could be facilitated via the application for interact with other users. That is, while both systems seem primed to
healthcare providers. address the push for electronic health records embodied by FHIR,
they also fall short of embracing the user-based innovation Bellwoar
Iterability (2012) has identified. In short, both platforms could provide users
Data and Connectivity. There is no advertised method for exporting
with a greater range of options for adjusting their access to data to
data from the DreamMapper application. Users can store personal
make that data open to new relations.
copies of their data by accessing the SD card of some devices and
Communication Design Quarterly 5.2 2017 47
This analysis reveals that future innovation on the Fitbit platform mask fit and this was attributable to some identifiable or correctable
may come from its social and messaging functions. The inclusion cause such as a broken strap, this information could be added to the
of social networking features may allow for new, innovative data. Although this example is quite mundane, providing users with
approaches to motivating users and for engagement with fellow agency in interpreting their data could be a means of increasing
users and healthcare providers. Although the potential for negative their involvement and “buy in” with regard to their treatment and,
uses of wearable data on the part of employers and other authority perhaps as a consequence of that, the benefit they experience from
figures is clear (cf. Carman, 2016; Chen & Pettypiece, 2015)—and that treatment.
the importance of data privacy with wearables underscores the need
for significant data security measures—there is also potential for
CONCLUSION
improved health outcomes. For example, there is some research
The analytical framework we describe here provides a means
that suggests that the use of activity monitors can lead to improved
for users, designers, and other scholars to think past the current
health (Evenson, Wen, & Herring, 2016).
ehealth focus on compliance and data monitoring. By evaluating
As we have suggested, designers can play a role in this process, the accessibility, adaptability, and iterability of data collection by
either through a focus on making systems more accessible to wearable devices and the connectivity of that information, these
individuals with low health literacies (Lazard & Mackert, 2015) or stakeholders can make informed decisions about wearable use
by designing systems for openness (Ito & Howe, 2016). We argue and, where possible, improve designs related to these criteria. The
that patient-centered design of this type that also embraces both ease analytic framework also aims to be a useful tool for evaluating
of use and speculative innovation is crucial to a changing healthcare and altering existing designs to address the ableist assumptions of
landscape. The DreamMapper application is less open to user- those designs (where they exist) and potentially make the health
based interventions when compared to the Fitbit. As compliance benefits of wearables available to more individuals. We offer it here
and precise attunement to patient needs is a primary purpose of the as a means for designers to engage with the unique affordances
system, there is little opportunity for users to add their own data, and situations presented by health wearables, building on previous
edit existing data, or turn off data collection. Accessibility of the work in disability studies and ehealth and design (Boudreaux et al.,
product to user data management is limited. Although the sleep data 2014; Dolmage, 2014; Ito & Howe, 2016; Kopelson, 2009; Rivers
from a user’s machine is gathered automatically, accessing that data and Söderlund, 2016).
requires extra technical steps and equipment. To wirelessly connect
Certainly, decisions for care and/or those otherwise designed
with the data, users must have additional wireless modules attached
to improve our health must be made thoughtfully, but if health
to their CPAP or BIPAP machines or manually remove the device’s
wearables are to be transformative to care in positive and
SD card to sync with their own and their provider’s computers. Such
empowering ways and if such transformations are going to be
diversity allows for tailoring the device and access to a range of use
ethical and productive, we must consider the interplay of and
cases, but extra devices in each step—modules, mobile devices,
among the factors we identify: different wearables, specific use-
a home computer—are all an additional expense and (potentially)
cases, and contexts for wearing. For wearables to be empowering
new technological barriers for users to master. Additionally, each is
and not simply reproduce existing power relations or intensify
a new way to collect data and share it with the app or providers but
new expectations of users, they must be open, and our design
does not necessarily allow for user ownership of that data.
approaches ought to recognize the diffractive relationship between
If a user were to switch providers or machines, he or she could and among users, wearables, and environments for use. These are
lose access to their data, either the ability to share it with the the ways that such technologies can facilitate uses and ends beyond
provider or to sync it with data from another, incompatible system, and sometimes heedless of those intended. To meet the needs of
respectively. Although the hardware and software issues above multiple users, wearables must at some level allow users to control
have various justifications and may be difficult to adjust, a concrete how their data is produced and disseminated as well as be mindful
improvement for users that would seem to pose little health risk of feedback from users who explore speculative relations within
would be the capability to export data from DreamMapper in an their particular use cases.
openly accessible format, one that would more directly support
Our design processes, in other words, must not be so focused
third party applications (Watkins, 2011). Similarly, data security
on enabling certain choices that designers fail to question the
for the device itself and the app could be improved; although data
investment in and limitations of circumscribed data collection, even
transmitted via wireless connections is encrypted, there is additional
as we are hopeful about the choices we imagine might be enabled
room to encrypt data on the SD and SmartCards and provide more
by it. Empowered decision-making might be an effect of wearable
secure login protocols for the app and web interfaces.
technologies in health and medicine, but it is critical that we not
Since long-term adherence to treatment plans for sleep apnea can simply enact design processes that uncritically reproduce abstract
be as low as 40% (cf. Donovan, Boeder, Malhotra, & Patel, 2015; ideas of the ethical and productive role of healthcare participants
Virk & Kotecha, 2016), and since compliance in apnea treatment is as those who make the “right” choices. It is important that we not
so important to its success, perhaps DreamMapper could be more simply reinvest in a new medicalized subjectivity for healthcare
open to user input as a way of enabling those with sleep apnea participation, a biocitizen who dutifully collects and shares their
to make adjustments that retrofit aspects of the user experience data via these developing technologies.
to work better with their particular needs and uses, feeding such
data back into the design process (Hamraie, 2013). Seeing as it is REFERENCES
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