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  <front>
    <journal-meta />
    <article-meta>
      <title-group>
        <article-title>Balancing Overreliance and Mistrust in Data-Driven Decision Making: A Critical View on the Role of Quantified Self in Diabetes Management</article-title>
      </title-group>
      <contrib-group>
        <contrib contrib-type="author">
          <string-name>Anna Sigridur Islind</string-name>
          <email>islind@ru.is</email>
          <xref ref-type="aff" rid="aff1">1</xref>
        </contrib>
        <contrib contrib-type="author">
          <string-name>Helena Vallo Hult</string-name>
          <email>helena.vallo-hult@hv.se</email>
          <xref ref-type="aff" rid="aff0">0</xref>
          <xref ref-type="aff" rid="aff2">2</xref>
        </contrib>
        <aff id="aff0">
          <label>0</label>
          <institution>Region Västra Götaland, NU Hospital Group</institution>
          ,
          <addr-line>Trollhättan</addr-line>
          ,
          <country country="SE">Sweden</country>
        </aff>
        <aff id="aff1">
          <label>1</label>
          <institution>Reykjavik University, Reykjavik, Iceland and University West</institution>
          ,
          <addr-line>Trollhattan</addr-line>
          ,
          <country country="SE">Sweden</country>
        </aff>
        <aff id="aff2">
          <label>2</label>
          <institution>School of Business, Economics and IT, University West</institution>
          ,
          <addr-line>Trollhättan</addr-line>
          ,
          <country country="SE">Sweden</country>
        </aff>
      </contrib-group>
      <fpage>74</fpage>
      <lpage>84</lpage>
      <abstract>
        <p>New self-care practices, such as self-management of chronic diseases, have emerged through mobile applications and devices, often designed, developed, and used outside the healthcare context. The development may lead to increased patient empowerment, shared decisionmaking and better communication, which is expected to benefit the care process. However, there are also potentially harmful effects related to safety, reliability, and security, with a corresponding need for understanding underlying algorithms and biases that may affect users. This calls for socio-technical perspectives, which take into consideration both the technological aspects of developing the app, as well as the social aspects of stakeholder involvement and collaborative design. In this paper, we describe the design and development of a mobile app for food nutrition information as part of diabetes self-management and critically discuss its implications for patients and designers. Our findings show that important learning aspects are connected to self-management, but there are also risks involved if too much or too little reliance is placed on the mobile app in the decision-making process.</p>
      </abstract>
      <kwd-group>
        <kwd>1 Healthcare</kwd>
        <kwd>Decision making</kwd>
        <kwd>Quantified Self</kwd>
        <kwd>Self-Management</kwd>
        <kwd>Mobile application</kwd>
        <kwd>Critical research</kwd>
        <kwd>Socio-technical design</kwd>
      </kwd-group>
    </article-meta>
  </front>
  <body>
    <sec id="sec-1">
      <title>1. Introduction</title>
      <p>
        Healthcare globally is facing major challenges. Thanks to medical and technical developments, we
are seeing an increasingly aging population, as people are more likely to survive previously fatal
diseases, and many patients are living longer with chronic diseases [e.g., 1]. The development has also
enabled patients to become more involved in making decisions about their health and treatment. At the
same time, there is increasing pressure on how to prioritize and best utilize limited resources to meet
the rising costs of healthcare. The use of digital technology, such as self-management through mobile
applications and wearables, can achieve sustainable care, reduce costs, and increase medical quality,
access, and quality of life [
        <xref ref-type="bibr" rid="ref2 ref3">2, 3</xref>
        ]. Patients and citizens today use multiple technologies and devices for
work, learning, and entertainment, and thus they have higher demands and expectations of healthcare
services to provide the same possibilities available in their personal lives [
        <xref ref-type="bibr" rid="ref4">4</xref>
        ]. The notion of “flipped
healthcare” has been used to illustrate the emerging new role of patients who are more engaged and
bring information and data gathered from apps and platforms developed and used outside of the
healthcare context into their clinical interactions [
        <xref ref-type="bibr" rid="ref5 ref6">5, 6</xref>
        ]. In all, this calls for more research to capture the
socio-technical aspects of the design and development of digital health technologies, looking beyond
traditional standalone systems [
        <xref ref-type="bibr" rid="ref4 ref7">4, 7</xref>
        ].
      </p>
      <p>
        The increased use of digital technology by patients has led to significant growth of patient-generated
health data as well as of digitally engaged patients who are involved, informed, and take an active role
in decisions about their health and treatment [
        <xref ref-type="bibr" rid="ref8 ref9">8, 9</xref>
        ]. Patient self-management can be initiated by the
healthcare provider or the patients themselves and adopt continuous monitoring of relevant disease or
lifestyle-related parameters originating outside the healthcare facilities. In this paper, we focus on
selfmanagement initiated by the patients, specifically on the design and development of a mobile app for
food nutrition information, as part of diabetes self-management. The overall aim is to contribute with
insights that can help improve and innovate self-care practices and quality of life for patients with
diabetes while also addressing the need for more research on app design and development related to
data-driven decision-making and digital self-management in general. The research question is: How
can a mobile application be designed and developed to support nutrition choices for patients with
diabetes, and what are the implications for patients and designers?
      </p>
      <p>The remaining part of the paper is structured as follows: first, we outline related research; we then
describe research methods (case description, design method, user tests and analysis); followed by the
research findings and analysis; finally, we discuss the implications and end with a conclusion and
outlook for future work.</p>
    </sec>
    <sec id="sec-2">
      <title>2. Related Work</title>
      <p>
        Digitalization within healthcare settings has been ongoing for decades. The electronic patient record
(EPR) has been vital when examining historical aspects, and the healthcare sector has invested heavily
in information systems, such as the EPR, as support for healthcare practices [
        <xref ref-type="bibr" rid="ref10 ref11 ref12">10-12</xref>
        ]. The digitalization
efforts in healthcare have mostly been large-scale, and focused on national standards and strategic
infrastructural changes that aim to integrate various digital solutions. The EPR has been the most
significant challenge since the early 2000s [
        <xref ref-type="bibr" rid="ref11">11</xref>
        ], but in recent years there has been a shift in focus from
the EPR as a working tool to other parts of healthcare. In that category, there is a newfound interest in
understanding how mobile applications (apps) can assist in small decision-making processes related to
healthcare in general and towards patient self-help or self-care in particular.
      </p>
      <p>
        Previous work on e-health and remote care shows that digital artifacts like apps have become
integrated into patient self-care practices, extending the meaning of what healthcare represents and
increasing the agency of patients in their own healthcare journey [
        <xref ref-type="bibr" rid="ref13 ref14 ref15 ref16 ref17 ref18">13-18</xref>
        ]. A large body of literature has
focused on healthcare performed as a part of call centers, where the care is viewed primarily in terms
of distributed care [
        <xref ref-type="bibr" rid="ref14 ref15 ref16 ref18">14-16, 18</xref>
        ]. Many studies on e-health are, according to Kahn [
        <xref ref-type="bibr" rid="ref19">19</xref>
        ], before-and-after
studies that rarely shed light on patient-centered outcomes, whereas fewer studies have focused on the
digitalization process through design, looking more closely at the role of patients. There are a few
attempts to be proactive and use the power of apps to create new self-care trajectories that can help with
everyday decision-making for the patients. In this context, a socio-technical perspective is important to
understanding the interplay between technical aspects of app design and development, along with the
social aspects of collaborative design that include stakeholder engagement and active participation in
the design process [
        <xref ref-type="bibr" rid="ref20 ref7">7, 20, 21</xref>
        ]
      </p>
      <p>
        This brings us to augmented intelligence. In recent years there has been a shift towards promoting
digital tools, such as apps that rely on machine learning algorithms and their potential to revolutionize
various parts of patient care. However, some parts of the self-care process will and should not be
enhanced by such efforts. Instead, intelligence augmentation (IA) might be more suitable than artificial
intelligence (AI) for specific areas. IA is commonly defined as computers and digital artifacts enhancing
human intelligence through their design and is not meant as a replacement of any sort [22]. Instead, IA
artifacts are intended to augment the learning process, aid the patient, and support the journey towards
self-care. With the use of apps and other digital artifacts comes a vast amount of data, and the data
analysis is within care, commonly done by humans. The interpretation of the data might someday be
made by AIs, but today, traditional self-care like dietary recommendations and timing for diabetes as
an example, is an analog practice of coaxing information by reading food packages, packaging the food,
and through trial and error, building up a knowledge base of what foods spike blood sugar more than
others [23]. The patient-generated health data becomes a part of the clinical decision-making process
and can be seen as a practice where intelligence augmentation through data and data produced in and
for healthcare contexts calls for analytical skills both by the patient and the nurse to engage in the
sensemaking process together. While the data in the world is increasing and people are increasingly relying
on data-driven decision-making, some application areas within healthcare are lagging and raise the
question of what should be kept analog [
        <xref ref-type="bibr" rid="ref8">8</xref>
        ]. That shift is the change that we focus on in this particular
paper. By critically examining the role of quantified self-apps, and highlighting the importance of
sociotechnical design, we seek to contribute with an in-depth understanding of how an app can help patients
be independentby augmenting their decision-making process.
      </p>
    </sec>
    <sec id="sec-3">
      <title>3. Research Approach</title>
      <p>The research setting is in Iceland, and the aim of the project was to make a mobile application that
could make it easier for users to look up food nutrition information and especially useful for those who
need to consider the intake of carbohydrates, sugars, fats, etc., such as a patient with diabetes, food
intolerance or allergies. Agile methodology was used during the project to break down the long-term
goals into smaller tasks. The period of 12 weeks was divided into sprints where each sprint had a
specific aim. Daily standup meetings were held in the mornings, and every second week of each sprint,
a "retrospective" was held, where the sprint was discussed, what went well and what went worse. Gitlab
was used to keep track of project status, requirements and coding. This section first describes the
technological environment for developing the app, first front-end, then back-end and database
connection and how it was implemented, followed by a description of user tests, data gathering and
analysis.
3.1.</p>
    </sec>
    <sec id="sec-4">
      <title>Programming environment and development process</title>
      <p>There were known difficulties in navigating the nutritional value of food in distribution on the
Icelandic market, indicating that it is vital for diabetics and others who need to closely monitor
nutritional value to have digital aides by their side. The app was not developed in collaboration with a
specific company, but the data that is the backbone of this project was provided by Matís
(https://matis.is/en/). The data was delivered in the form of a .csv file that contained over 1300 different
foods along with their nutrition information. The front-end was written in JavaScript, using Airbnb
programming rules due to previous use and good documentation, and ESLint was used to review and
ensure that they were enforced. The back end was written in Python and used the pep8 rules and pylint
addition to Vscode to refactor the code. The app was developed/programmed in ReactJS / React Native,
which made it possible to break the code into many small parts, each with its own task. CSS was used
to design the code. The Expo CLI was used for testing, where the small program could be tested on
both computers and smart devices.</p>
      <p>The back end was split to separate users and data. Users could log in with an email address. The data
was stored in a PostgreSQL server hosted by Amazon AWS (Amazon Web Service). On that basis, the
main data on Matís food products were housed: nutritional value, vitamins, light description of contents,
etc. Other information generated during the run, such as user settings and food that the user chose to
save, were also set in PostgreSQL, the foundation. To retrieve data from the database and send to the
front end was python websocket server built, but when the script started to take shape, it was decided
to move the functionality from it to the Apache server hosted by AWS. WSGI (Web Server Gateway
Interface) plugin was added to Apache to allow it to send results from python code as http answers.
This decision paid off because the Apache server could serve several people at once was more
convenient to use and was much faster.</p>
      <p>In the first version, the food was classified into its own food category and had a special origin, and
the food also had data on the contents, which are vitamins, minerals and nutrients. Whereas in the
second version of the database, the food is classified into its own food category and has a special origin.
The content of the food has been compiled under the name Nutrients, and in addition, there are users
who have saved food and optional harvests. The excel file was provided through PostgreSQL database
by Apache2 server with mod_wsgi plugin that runs Python to be a monkey for the script. Firebase is
used to store user data and handle user authentication. Expo converts React JavaScript code into native
smartphone widgets (see fig. 1).</p>
      <p>In Iceland, as in other countries, there are many types of foods available in different stores and
searching for nutrition information is often not simple. It is possible to search online according to the
ingredient descriptions of individual foods, but often that information is not in an accessible or
easy-toread form. This is problematic for many users, and this project aims to design and develop an app that
publishes information to users on the nutritional value of food that is distributed on the Icelandic market
in a way that is simple and accessible. To achieve this goal of a good design—i.e., that enables users to
search for food and ingredients in a simple way and see key information such as nutritional value—user
tests were conducted with the intended users of the app and redesigned based on the results of those
tests. Each user test consisted of an introduction, a pre-interview focusing on background information
and demographics (including questions such as age, gender, diet, health problems related to food,
smartphone literacy and computer literacy); an assignment with tasks to do in the app; and a
postinterview with questions focusing on user experience, suggestions for improvement and assessing user
satisfaction.</p>
      <p>A majority of the respondents were in the age group between 31-40 years, followed by the age
groups 20-30 years and 61-71 years. There was a fairly even distribution between men and women as
well as between iOS and Android. When asked about their computer skills (scale 1-10, where ten equals
highly skilled), most of the respondents rated themselves between 5-8, but two users gave a rating of
nine. Only two of the users said they had used a similar app before, almost none of them had dietary or
health-related food restrictions, and when asked to determine their general knowledge of nutritional
content, most users gave a rating between 5-10 (10 being the highest (See figure 2).</p>
      <p>In order to be able to adapt to the needs of most users, it is not enough just to have the right
functionality. Great emphasis was also placed on the design. Initially, a rough prototype was created,
which was used for user testing and user interviews (example screenshots are provided in figure 3).</p>
      <p>The usability tests followed a standard form created by the team to ensure that all tests were
conducted in the same way, using the same data during the test. Each user test lasted about 30 minutes
and was recorded. Due to restrictions in force due to COVID-19 was not considered advisable to take
these tests on-site, and instead testing through either Discord or Microsoft Teams was deemed
appropriate. The user shared a screen to allow the administrator to monitor the resolution of the to-do
list, and the aim of these tests was to monitor and measure three main factors:
1. Goal effectiveness: Accuracy and enforcement that users achieve in pursuing a specific goal;</p>
      <p>Did the user complete the project? and; If not, what were the main obstacles?
2. Efficiency: Accuracy of the user in achieving his goal in the shortest possible time; How clear
is this goal? and; How long was the user completing the project?
3. Satisfaction: Avoid inconvenience, aim for a positive attitude from the user; How did you like
the system? and; How would you rate it?</p>
      <p>The tasks were submitted to the user one by one. A "think-aloud" method was used in which the
users were encouraged to think aloud and describe what they were doing or expected to be able to do
while performing the tasks. The administrator observed and noted the time it took to complete each task
which was written down along with other comments and reflections from the observation. After
completion of all user tests, results and comments were collected and summarized to draw conclusions
and draft improvements in design, user experience and functionality.</p>
    </sec>
    <sec id="sec-5">
      <title>4. Findings</title>
      <p>The findings are presented according to the design process: identified user groups, artifact
requirements and the prototype/user interface of the application.
4.1.</p>
    </sec>
    <sec id="sec-6">
      <title>User groups and requirements</title>
      <p>When designing software, it is important to define user groups that can use it and prioritize them
according to their intended importance (A, B, C, User Group A is the highest priority). Five user groups
were identified: 1) General users where anyone can use the information (C); 2) Users with allergies as
it is good for them to avoid certain foods; 3) Users with underlying diseases (e.g., diabetes) where it is
imperative to monitor the nutritional content of the food consumed (e.g., carbohydrates); 4) Users with
food intolerance, and 5) Users who need or choose to live on a special diet.</p>
      <p>The user experience may be different, but it is important to identify the requirements and
functionality that the system is expected to fulfill. The main requirements considered important and/or
would improve the user experience is summarized by priority (A-C) in Table 1 below. Requirement A
are the requirements of the developers considers that must be implemented in order to be able to deliver
a usable product, B requirements are requirements that are not as important but improve the user
experience considerably, they will only be implemented when all A requirements are ready. C
requirements are requirements that the developers thought were good to have but are not necessary for
scripts.
A summary of the user tests, and the time it took to complete each task in the assignment (compared to
estimated time), is provided in table 2. Below is a list of comments and suggestions for improvements
made by users during the tests. This is also an excerpt from the problems users encountered while
dealing with tasks, highlighting the potential issues that the participants faced along with suggestions
for solutions and improvements.
User comments and suggestions for improvements
•
•</p>
      <p>Favorites were perceived as confusing, it would be more understandable if the dropdown contained
categories (e.g., meat, dairy products, fish etc.), and displays everything that belongs to that
category. Favorites could be one of these categories. Users also found it difficult to find
healthrelated restrictions to tick and to find dietary restrictions to label if applicable.</p>
      <p>Suggestions for changes and improvements
o
o
o
o
o
o
o
o
o
o
o
o
o
o
o
o
o</p>
      <p>Add the possibility to "switch" favorites by pressing the heart, and see it become empty or
filled depending on whether it is in favorites or not.</p>
      <p>Add the possibility to indicate that you are following a special diet, e.g., vegan, keto,
carnivorous, etc.</p>
      <p>Remove dietary restrictions from "Settings" and place it directly under the burger, as found
be pretty deep on these settings and not default where to look.</p>
      <p>Make it possible to add food and to see all food categories
A bar code or QR signal reader would be cool.</p>
      <p>The "Location" setting is unnecessary
Explaining everything "My" is unnecessary and a bit personal. Change these names.
Profile photo is unnecessary?
Difficult to find "Last viewed" Redefine as "History" to follow naming conventions in the
technology sector.
"Contact us" is located in a confusing place. Could be in footer rather.</p>
      <p>Add the possibility to keep a food diary and calculate calories
Set the script to display certain information for a short period of time, which may be suitable
for visitors in a visit that need to pay attention to diet.</p>
      <p>Add a link to the Directorate of Health's website, regarding advice
Show pictures of the food
Can find "macronutrients" of food to be able to track oral intake. Helps with weight
management.</p>
      <p>Add "dark mode"
Would be willing to see if the food is environmentally friendly.
4.2.</p>
    </sec>
    <sec id="sec-7">
      <title>User interface</title>
      <p>The result of all our work is JappL, a small program that informs the user about nutritional value
food, whether the food may be harmful to the user or cause him inconvenience. We will go through the
script and discuss each window individually, each of their goals is and where they lead the user.</p>
      <p>The landing page (fig 5a) appears after the script launches for the first time. It is necessary to log
in to be able to push it. If the user does not have access, they can register. User enters the registration
screen by selecting "Sign Up". The menu (Fig 5b) open after the user has logged in. List of food
products listed in the database are displayed. User can scroll through the list and select from it, or search
for a name in a search bar located at the top of the screen. The applet returns the list filtered with the
food products that contain the search string. The user settings, the user is prompted to turn on settings
that let him know if the food he inspects meets the conditions that are turned on (fig 5c). If you click
on the information ball, a window will appear showing more details information.</p>
      <p>Notifications: After the user has entered the settings then lets the script let him know if the food
that he is viewing the contents of something that might be dangerous to him. The applet shows this
warning in the overall list as well in the food information card. If you click on the warning triangle in
the info card, it will appear the reason why the user is warned. Add to favorites: The user is offered to
add the selected food favorites. When you click on "Add to favorites" then the food in question goes on
a list as slowly as possible is viewed under the "Favorites" tab. Located on the bar at the bottom of the
page. As if the food is already a favorite, then offered user to remove it from this list.</p>
    </sec>
    <sec id="sec-8">
      <title>5. Discussion</title>
      <p>Healthcare is rapidly changing as advances in medicine and technology have enabled patients to be
more actively involved and take an active role in decisions about their health and treatment. In this
paper, we describe the design and development of a mobile app for food nutrition information as part
of diabetes self-management, and critically discuss its implications for patients and designers. The
analysis of our findings revealed three important aspects related to ethical considerations in the
decision-making process</p>
      <p>
        First, and in line with prior research on digital health, our study highlights that the use of mobile
applications for self-care has the dual effect of both enabling and constraining patients in self-managing
their disease in everyday life [24]. Whether initiated by healthcare or by the patients themselves,
selfmanagement and continuous monitoring mean the integration of digital technology, which has a bearing
on the meaning of care and has influence on the role of both professionals and patients [
        <xref ref-type="bibr" rid="ref15 ref16 ref6">6, 15, 16, 24</xref>
        ].
As the responsibility of care is slowly shifting from the healthcare provider to the patients, where part
of the decision-making is in the app, patients must have the ability, both in terms of access to their data
and the skills and knowledge needed to make sense of it. This, to act in response to decisions and
recommendations as part of self-management through mobile applications that may have a direct impact
on their health and well-being. Our findings support prior research that calls for socio-technical
perspectives to unpack the interplay between the technical and social aspects of app design and
development when designing for specific purposes or practices [
        <xref ref-type="bibr" rid="ref20 ref7">7, 20, 21</xref>
        ]
      </p>
      <p>Secondly, with increased use of apps and other types of digital artifacts comes a vast amount of data
and the analysis of the data is within care, commonly done by humans. While AIs may in the future
interpret the data, today, traditional self-care is a highly analog practice of coaxing information, such
as in the case of diabetes management, through reading the packages of the food, and slowly, through
trial and error, building up a knowledge base of what food spikes the blood sugar more than others [23].
The patient-generated health data becomes a part of the clinical decision-making process and can be
seen as a practice where intelligence augmentation through data and data produced in and for healthcare
contexts calls for analytical skills both by the patient and the nurse to engage in the sense-making
process together. We argue that going from the analog practice based primarily on memory to a
quantified self might not be optimal for all. Instead, we propose that some apps stay as augmented
intelligence devices.</p>
      <p>Thirdly, healthcare is known for its reactive character, meaning that when people get sick, they seek
healthcare. In contrast, as mentioned earlier, this paper focuses on diabetes patients and their selection
of eatables. While there exist a number of applications for nutritional information, most of them are
targeted toward fitness, with integrated features for keeping a food diary and logging exercises. Few
are designed to aid diabetes patients in their daily food choices. Design principles for others that would
like to embark on the design of self-care app, in order to support diabetes patients and augment their
intelligence: i) offer an interface where food producers have the opportunity to register their products
the foundation; ii) allow users to add food to the database. Add a barcode scanner, where you can view
the contents of a product with just one click scan its packaging barcodes; iii) add data from other
databases. Loosely examined, institutions exist in most of our neighboring countries, we also found
private information sources that offer similar information.; iv) provide a food diary, users can record
food and shame size, the script keeps it that way keep track of the amount of nutrients that have been
ingested.</p>
    </sec>
    <sec id="sec-9">
      <title>6. Conclusion and Future Work</title>
      <p>In conclusion, this study highlights the need for a critical view of the role of quantified self in general
and diabetes self-management in particular. The new self-care practices, through the use of mobile
applications, often designed, developed and used outside of the healthcare context, may be beneficial
in many ways but also poses risks, and there is clearly a need for understanding underlying algorithms
and potential biases that may affect users. In this context, socio-technical perspectives that consider the
technological aspects of developing the app and the social aspects of stakeholder involvement and
collaborative design are critical. In this paper, we describe the design and development of a mobile app
for food nutrition information as part of diabetes self-management and critically discuss its implications
for patients and designers. Our findings show that there are important learning aspects connected to
self-management and that there are risks involved if too much, or too little, reliance is placed on the
mobile app in the decision-making process. In conclusion, our findings show that there is a need for
patients to learn how to balance between overreliance and mistrust in augmented decision-making,
which calls for ethical considerations and a critical approach.</p>
    </sec>
    <sec id="sec-10">
      <title>7. References</title>
      <p>[21] H. Vallo Hult, A. S. Islind, K. Rydenman, P. Hällsjö Wekell, “Decreased Memory Bias via a
Mobile Application: A Symptom Tracker to Monitor Children's Periodic Fever,” Stud Health
Technol Inform, vol. 294, pp. 915-919, May 25, 2022.
[22] P. C. Kyllonen, R. D. Roberts, L. Stankov, Extending intelligence: Enhancement and new
constructs: Routledge, 2007.
[23] A. S. Islind, U. Lundh Snis, “From co-design to co-care: designing a collaborative practice in care,”</p>
      <p>Systems, Signs &amp; Actions, vol. 11, no. 1, pp. 1-24, 2018.
[24] A. S. Islind, H. Vallo Hult, V. Johansson, E. Angenete, M. Gellerstedt, “Invisible Work meets
Visible Work: Infrastructuring from the Perspective of Patients and Healthcare Professionals,” in
HICSS, January 5-8, 2021.</p>
    </sec>
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