# Co-creating a Digital Symptom Tracker: An App as a Boundary Object in the Context of Pediatric Care

Anna Sigridur Islind, Helena Vallo Hult, Karin Rydenman, Per Wekell

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Anna Sigridur Islind, Helena Vallo Hult, Karin Rydenman, Per Wekell. Co-creating a Digital Symptom Tracker: An App as a Boundary Object in the Context of Pediatric Care. International Working Conference on Transfer and Diffusion of IT (TDIT), Jun 2022, Maynooth, Ireland. pp.79-93, 10.1007/978-3-031-17968-6_5. hal-04666758

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# Co-Creating a Digital Symptom Tracker: An App as a Boundary Object in the Context of Pediatric Care

Anna Sigridur Islind¹ [0000-0002-4563-0001], Helena Vallo Hult²,³ [0000-0002-0493-8974], Karin Rydenman³ [0000-0002-6908-5300] and Per Wekell³,⁴ [0000-0002-8137-8245]

¹Reykjavik University, Department of Computer Science, Reykjavik, Iceland

²University West, School of Business, Economics & IT, Trollhattan, Sweden

³NU Hospital Group, Trollhattan, Sweden

⁴University of Gothenburg, Gothenburg, Sweden
islind@ru.is

**Abstract.** The rise of digital health has provided new opportunities for patients to be more actively involved in their health and wellbeing. Despite the increased use of mobile health apps, there is still a lack of research on patient self-monitoring, and few studies have focused on children with chronic diseases and their parents. In this study, we draw from a case of the design of a mobile application – a symptom tracker – to continuously monitor children with periodic fever and the theoretical concept of boundary objects, to understand the role of digital artifacts in current healthcare practice. The research approach is qualitative, building on interview data with parents and experiences from the co-design process involving researchers, physicians, and other key stakeholders. The aim of the paper is to contribute with a better understanding of how an app for tracking children's fever (a symptom tracker) can support the pediatricians as well as the parents and their children during the treatment process. The research question is: *In what ways can a symptom tracker increase stakeholder involvement and how may this affect their relationship boundaries and collaborations?* Our findings suggest that the symptom tracker can be seen as a boundary object that binds the children, parents, and pediatricians treating them by connecting the app to the context of both the patients and healthcare practice. We argue that such an object (symptom tracker) can function as external support and, thereby, an essential part of the treatment process.

**Keywords:** Boundary object, Co-Creation, Children, Information systems, Medical apps, Mobile health, Self-monitoring, Digital symptom tracker, IT design and diffusion, Pediatric care.

## 1 Introduction

The increased use of consumer health technologies and wearables, such as mobile health apps for self-care and symptom trackers, brings significant change to healthcare practice [1-3]. Increased patient engagement and patient-generated health data (PGHD) enable patients to be more engaged and understand and manage their health due to the transparency and access to data [4]. However, it is also shifting how work is performed, as the work conducted exclusively by health professionals in the past is now also conducted by patients [5-8]. Patient self-monitoring can be initiated by the healthcare
provider or by the patients themselves and refer to technologies such as health apps that patients can use to measure and analyze their health data (e.g., heart rate, blood pressure and blood sugar levels in combination with dietary habits, exercise, sleep patterns, stress etc.). The utilization of digital care is often described as part of the solution to challenges facing modern healthcare, related to an aging population, chronic disease management and subsequent pressure on healthcare providers to prioritize and decide on how to make use of limited resources. The push for digital care also includes democratization of healthcare processes, intended to provide equal care and the patients' right to gain and access information and be more proactive in their health and wellbeing [9, 10]. Despite the potential, however, actual use of patient self-monitoring within clinical practice remains limited, partly due to issues related to safety, reliability, and security of using consumer wearables in health care and that patients rarely are involved in the design process [1, 11, 12]. There is still a lack of research on patient self-monitoring in general, and few studies have focused on children with chronic diseases and their parents.

In this paper, we focus on self-monitoring initiated by healthcare, more specifically on the design of an app for collecting subjective data over an extended period to continuously follow children with a prolonged state of fever. Prior research has shown that monitoring the fever episodes closely has benefits such as improved patient quality of life, alongside more precise and personalized disease management. A symptom tracker can be used to gather data on the periodic fever episodes, which can help in understanding the regularity and severity of the illness, increase engagement, and promote patient empowerment while enhancing adherence to treatment [6, 13]. The overall project goal is to contribute with insights that can help improve and innovate healthcare practice in the real-world context of pediatric care while also addressing the need for more research on app design and development within the scope of Information systems (IS) and health information technology (HIT) research. The project as a whole, highlights the importance of a data-driven approach to systematically collecting data over an extended period to forward clinical practice and research on complex, chronic topics such as periodic fever, which is under-researched to date. Empirically we draw from a case of designing a mobile application – a symptom tracker – to monitor children with periodic fever continuously. The study is theoretically informed by the concept of boundary objects, first introduced by Star and Griesemer (1989), and regarded as a valuable perspective for understanding the role of digital artifacts in current healthcare practice [14, 15]. More specifically, the paper aims to examine how an app for tracking children's fever (a symptom tracker) can support the pediatricians as well as the parents and their children during the treatment process, and how this may affect the relationship boundaries between patients and healthcare professionals, and how their collaboration can be strengthened. The research question is: *In what ways can a symptom tracker increase stakeholder involvement and how may this affect their relationship boundaries and collaboration?*

The remaining part of the paper is structured as follows: first, we outline related research and introduce the theoretical background and the concept of boundary objects; we then describe research methods (study background, data collection, and analysis);
followed by the research findings and analysis; finally, we discuss the results in relation
to the boundary object literature, and end with a conclusion and outlook for future work.

## 2 Related Research

Over the past years, researchers across disciplines have studied the datafication of healthcare and self-care practices, enabled by the increase in mobile apps, both designed, developed and delivered by healthcare as well as brought in by patients [4, 16, 17]. Within the IS field, health information technology (HIT) research has shifted from an initial interest in health care as a new context for evaluating traditional IT artifacts to an increased interest in a broader range of topics such as consumer health care applications and wearables. This suggests that the IS field's HIT research focus is diversifying, with, for instance, the impact of health IT and analytics on patient behaviors and outcomes as an emerging theme [18, 19]. In this paper, we build on and contribute to the growing body of literature on data work, datafication and data-driven healthcare by examining the role of mobile health and medical apps for self-monitoring in specific.

The design, development and use of digital artifacts (such as m-health apps) both increase and change the data flow into healthcare, which, in turn, requires new forms of data work, e.g., data collaboration, translation work with data and increased flow of data into healthcare settings as well as patients' lives [2, 4, 20]. Patient-generated health data (PGHD) encompasses data produced and collected by patients (or those seeking healthcare) and brought into healthcare to enhance the quality of care and pinpoint the problem at hand. PGHD includes both objective health data collected from wearables, such as blood pressure and weight, as well as subjective self-assessments such as sleeping habits and pain assessment. The collection of PGHD and engagement in self-monitoring through data can reinforce the behaviors that prove to be of good value through visualizations of that data [14, 21]. Data is made available to the care provider, who can follow if the values deviate from the normal. The purpose of self-monitoring is to strengthen the patient's self-care, control over their health, and security experience while also leading to better use of health care resources. The possibility of detecting periods of deterioration at an early stage means that unnecessary and costly visits to emergency rooms and admissions can be avoided. However, prior research highlights that to fulfill the positive outcomes of mHealth apps, such as improved patient quality of life, alongside more precise and personalized disease management, they need to be linked to clinical practice and adapted to the context of both patients and healthcare [22, 23].

A review of the literature shows that self-monitoring may improve patient symptoms and lead to medication changes and that patients typically perceive self-monitoring tools as helpful in improving communication with health care providers [24]. Still, despite the potential and documented benefits, both patients and healthcare professionals tend to be reluctant to use such technologies [1, 11, 12]. Prior research on related topics such as shared decision making (SDM) and patient-centered communication point to an agreement on the patient's right to be involved and take an
active role in decisions concerning their health, although health professionals' intentions to engage in shared decision-making are still uncertain [25]. Research in this area has also, to a large extent, focused on observable behaviors to compare and understand differences in content and outcomes while overlooking interactional and contextual dimensions, such as social relationships and the situated nature of human sense-making [26]. Dadgar and Joshi [11] emphasize the need for patient involvement in designing digital artifacts for self-monitoring, particularly identifying and supporting values important for patients, rather than focusing merely on lowering costs and improving clinical outcomes. The fundamentals of co-design entail that the relevant stakeholders have a voice in the design processes that will ultimately affect their lives [27, 28]. Recent examples from healthcare have likewise shown that including tertiary stakeholders, such as parents, in co-design can lead to digital technology that will both be relevant and useful [29, 30].

Furthermore, patients' use of medical apps and online health information can impact consultations positively as well as negatively. The COVID-19 pandemic has accelerated the trend towards digital and remote healthcare delivery, introducing novel challenges and uncertainties. One area of concern regards the relationship and communication between the patient and healthcare professionals, where more research is needed to capture social and contextual dimensions in practice [26]. Studies have shown that patients' online health information-seeking can improve the patient-physician relationship and change the traditional structure of that relationship, in which patients rely on healthcare professionals as sole providers of medical information [31]. Both patients and healthcare professionals can experience feelings of anxiety in response to insecurities around, for instance, the quality of health data and information and the inability of the professionals to provide answers to questions. However, the professionals can also take on a guiding role to facilitate data interpretation, feeling more valued by the patients. They can also learn from and together with the patients as the new forms of data work also seem to increase patients' reliance on professional knowledge and expertise [32, 33].

## 3 Theory

According to the literature, an object becomes a boundary object when it serves as a device for transformation, translation, and negotiation at the practice boundaries [34-43]. What is needed in such a process is a form of a representation, for instance, in terms of a model or in terms of a physical object, which can serve as a boundary object that binds two partners together in order to support knowledge sharing and co-creation of meaning [30, 44, 45]. However, boundary objects can only facilitate parts of the communication surrounding—for example, a symptom tracker can only function as just that, a symptom tracker—and as such, the object itself cannot replace communication and collaboration [14, 46].

To dig deeper into the pre-existing understanding of the effects of a technical system on the social system and vice versa, such as the impact of a symptom tracker on healthcare practice (and vice versa), the theoretical lens of boundary objects can be
useful. The following text will, therefore, further explore the socio-technical interplay
and the meaning of the technology (i.e., the digital symptom trackers) for the practices
involved (the healthcare professionals' work, the parents' role, the childrens' agency)
which it is being designed and developed for and will later be operated alongside.
Boundary objects are often technological artifacts but can also be physical objects that
bind professions or stakeholders, such as drawings or prototypes [35, 47], repositories,
standardized forms or workflow matrices [40]. Boundary objects can also be on a more
abstract level, such as processes, methods [48], metaphors [49], or narratives [36].
Boundary objects have been studied in various contexts where different kinds of
artifacts have been conveyed as boundary objects. These include studies within
museums [42], using engineering drawings as boundary objects [37, 50], aircraft
maintenance requests [51], human genome mapping [52], robots in educational settings
[53], digital platforms in healthcare settings [43] and medical patient records [54] as
boundary objects. Grand challenges have been studied as boundary objects within
human genome mapping, where it is argued that they allow for the involvement of
different communities that change over time, even though the true consensus is often
lacking when it comes to grand challenges [52]. Seeing them as boundary objects still
allows for collaboration and cooperation in situations (such as human genome
mapping) where there is a struggle to sustain initiatives over a long time frame [52]. In
that case, the challenge itself was the boundary object whereas we would like to argue
that the challenge of prolonged periodic fever in children, and the large scale obstacles
that logging symptoms of periodic fever brings, can in a similar way be seen as way to
cross and bridge boundaries but we would like to extend the view and clarify that we
see the digital symptom tracker as the boundary object.

While the term boundary objects can be used for various artifacts, it usually applies to
somewhat stable artifacts. Ewenstein and Whyte [55] argue for the notion of making a
distinction between closed and open boundary objects. Their arguments show the
importance of closed boundary objects as stable and structured representations of expert
knowledge. Closed boundary objects are, therefore, well-structured and concrete
boundary objects that span well-defined boundaries of expert practices [55], and these
have been emphasized as having a large capacity as mediators in the relation between
groups [38]. Most research on boundary objects draws on closed boundary objects in
accordance with [55]. In contrast, open boundary objects are ill-structured, open-ended
boundary objects that raise questions and stimulate a dialog instead of being well-
structured and finished solutions. These open boundary objects can be seen as helpful
for evolving and raising questions about some aspects of the design process while also
strategically stabilizing other aspects of the design [55]. Therefore, open boundary
objects are more present as an integrated part of the design process [43, 45]. Moreover,
open boundary objects can be of two specific sorts: designated boundary objects or
boundary objects-in-use [45]. Designated boundary objects are, from the very
beginning, designed to function as boundary objects, whereas boundary objects-in-use
happen to become boundary objects during either the design process or implementation
process [14, 45]. Boundary objects can also be both; both designated boundary objects
but also function as a boundary object-in-use, utilizing both states make it a stronger
boundary object.
Emergent boundary objects are boundary objects that have not yet been stabilized or gained final meaning, according to Dalsgaard, Halskov and Basballe [56]. In accordance with Ewenstein and Whyte [55], they can also be seen as open boundary objects. The literature on boundary objects in general addresses boundary objects as something that is negotiated and interpreted differently by the different communities of practice involved. However, the boundary object itself is generally not transformed during the design process, while emergent boundary objects and open boundary objects are often derived from complex, wicked problems and begin in design concepts that continuously change and evolve during the design process [55, 56]. Open boundary objects can be especially applicable as a concept where non-artifacts are seen as boundary objects [42, 57]. The distinction made by [55] between open and closed boundary objects has grounds in Leigh Star's (2010) distinctions "between the 'ill-structured' use of boundary objects between social worlds and more specific 'tailored uses' within those worlds" [57, 58]. What we wanted to arrive at, from our theoretical outline, is that open and emergent boundary objects that are ill-structured and somewhat designated but have not yet become boundary objects-in-use, are our primary focus in this paper.

# 4 Research Methods

In this paper, we report on an ongoing project and the combined experiences from the co-design process involving researchers, Swedish pediatricians (physicians specializing in medical care for children), parents and other key stakeholders. In our design phase, we wanted a broader perspective and therefore did not limit participants only to parents to children with periodic fever but instead draw on interviews with 100 parents that have contributed to our co-design process.

The research approach is qualitative, intending to capture insights into the needs and views of the parents and health professionals and the nature of the structured support that a mobile application (symptom tracker) can provide. All interviews were read several times, collaboratively coded, and analyzed through content analysis [59], and validated with pediatricians. As mentioned above, the design approach is co-design, and the project considers all stakeholders involved in the co-design process. In contrast, this paper focuses on the views of the parents (based on the interview data) and implications when co-designing for continuous monitoring of children.

## 4.1 Research Context

The focus of this study is on self-monitoring initiated by healthcare, more specifically on the design of an app for collecting subjective data over an extended period to continuously follow children with a prolonged state of fever (PFAPA, Periodic Fever, Aphthous Stomatitis, Pharyngitis, and Cervical Adenitis). The research setting is in Swedish public healthcare, at one of the larger non-university hospital groups, consisting of three hospitals and around 5,000 employees that provide healthcare and medical services for 270,000 inhabitants. The overall objective within the larger project is to enable digital documentation of symptoms of periodic fever and to research onset,
regularity, the severity of illness, and environmental causes that could be at play in the episodes. Furthermore, through the digital symptom tracker, we aim to increase the engagement of parents and find new patterns through visualizations of the data.

PFAPA syndrome is the most common autoinflammatory disorder among children in many parts of the world. It typically has an onset under the age of five and is a common and important differential diagnosis among preschool children that experience recurrent fevers. The fever episodes usually last 3-6 days and typically recur regularly with an interval of 3-6 weeks. Between the fever episodes, the child is typically symptom-free with normalized inflammatory variables and grows normally [60, 61]. Awareness and recognition of PFAPA are crucial to providing adequate treatment and avoiding misdiagnosis. Therefore, a symptom tracker is considered helpful for tracking the disease progression, characterizing the fever episodes, and getting an overview of their regularity. However, it can be challenging for the parents to document and report symptoms in a structured manner, especially using an analog tracker (e.g., a paper-based symptom journal). A user-friendly and co-designed app can therefore be a valuable tool in diagnosing as well as in assessing the symptoms over time.

The app will be used in Sweden to support parents of children with PFAPA to systematically and continuously digitally log and track symptoms [62]. The multidisciplinary research team consists of researchers and designers with pediatrics and health informatics expertise.

## 4.2 Data collection and analysis

The research approach is qualitative, and the data collection for this phase was conducted through semi-structured interviews with parents [63], combined with experiences and observations from the co-design process, emphasizing the design phase, including working meetings and project documentation (document analysis). In this paper we report our findings from the initial part of the design process. We wanted a broader perspective on parents' needs and views of using a mobile application in this phase, as the app will be used both for children with periodic fevers and for healthy controls. Therefore, the participants are not limited only to parents to children with periodic fever. The interviews were semi-structured around topics, where each main topic had subtopics. The goal of the user interviews is to determine what sort of interface would suit the parents best and what kind of interface would best suit the medical staff, as well as what data and information would be relevant for them in the application. We plan to continue by specifically include parents to children with PFAPA, and their pediatricians in the co-design process in the next phase of the project. Data collection activities are specified in Figure 1.
<figure><img src="image_3.png" /><figcaption>**Fig. 1.** Data collection activities</figcaption></figure>

All interviews were read several times, collaboratively coded, and analyzed through content analysis [59] and validated with pediatricians. The analysis was conducted using an interpretive and iterative approach to find common themes and patterns in the empirical material and theoretically informed by the boundary object literature, explicitly looking for occurrences where the participants described aspects related to communication, collaboration and interaction. As mentioned above, the design approach is co-design, and the project considers all stakeholders involved in the co-design process. In this paper, the focus is on the views of the parents (based on the interview data) and implications when co-designing for continuous monitoring of children.

# 5 Findings

In the following text, we summarize the findings from the parents, and healthcare professionals, focusing on how the app can facilitate reflections, increase compliance and engagement, and strengthen collaboration and communication between and among the parents and their children and the health professionals.

## 5.1 Asynchronous communication to create a bridge

Several parents reported that they wanted to communicate directly and securely with their pediatrician within the app. The messages, or chat, would have to be asynchronous, as the parents are aware that they might want to send a message to their pediatrician in the middle of the night. Still, they do however not expect their pediatrician to answer them. They do mind that the messages are only delivered in the morning since they want the messages within the app only because they are afraid to forget to send the message if they are unable to do it when they come to think of it due to extended sleep deprivation. On that note, one parent described: "Sometimes, when
my child is sick, I wake up, and it might be days since I got a good night's sleep. Those
nights, it would be good to be able to send a message just there and then, not because
I want a reply there and then, but because I really don't want to forget to send the
pediatrician a message if something has drastically changed." Sending messages in an
asynchronous format would be helpful to reduce the risk of the parents forgetting to
send them.

The parents said that they: "...really want it to be easy, simple and quick to write down
my child's symptoms" and also stressed the importance of choosing the day: "I need to
be able to choose which day I am writing down symptoms for, just so that I do it
correctly." Moreover, they stressed that they would like to be able to ask a healthcare
professional a question: "it is important to me to be able to do that, and I also want to
be able to see answers from a healthcare professional." The healthcare professionals
also discussed the need for a messaging service: "I want to be able to see messages
from parents, and similarly, I want to be able to respond to parents' messages."

## 5.2 Notifications to increase compliance

Parents also highlighted a need for support in terms of timely reminders, as they knew
from experience that even though they had the ambition and willingness to register
symptoms regularly, it is easy to forget, especially when being sleep deprived, and the
primary focus is on taking care of one's child that is ill. Regarding notifications, one
parent uttered: "Oh, yes. That and just that would help me enormously." A third parent
offered the opinion that notifications might even help with the systematics in the
registration: "It is good to have something that helps you remember the important
things, and it would help to register the symptoms every day at the same time
systematically." Yet another parent expressed that it could help during stressful times:
"I might forget, when my child is sick I am sometimes going on very little sleep, but if I
would get a notification, then I would still register. So, notifications would help me."
The parents would gain from having notifications implemented within the app.

They also discussed the need for reminders to fill out the symptom tracker: "I would
like to be reminded to fill in the diary, and I also want to be able to look at symptoms
from older dates." Moreover, they discussed the need to personalize the time of the
reminders: "If I could choose when the reminders would appear, that would be just
amazing. I am probably not like everyone else; my routine is messed up, and I would
like to set the time when the reminders should appear myself. I am tired sometimes
when I get notifications in other apps, and then I have zero energy to fill them out and
end up ignoring them. If I could choose the time of when the notification should appear
on my screen, then I would definitely make an effort to fill it out."

## 5.3 Visualizations to trigger reflection

Regarding how the information registered in the app could be presented, one parent
suggested: "Maybe some kind of graph that shows a clear and simple pattern in the
information. Perhaps we should try to fill in more information than symptoms to see if
there is any correlation between external factors and changes in the body. That would
be really good," while another parent said: "Just simple. The only thing that matters is
that I can see a trend for a specific time period. Everything needs to work fast and
efficiently; I rarely have time that I can afford to waste when I have a sick child." One
parent also offered the view that the visualizations might help with reflection: "If I could
see how it is over time, then I could also see when it is better because sometimes it
might be better for a longer time as well, but it is difficult to know without seeing it
visually." From these quotes, it is apparent that visualizations are a crucial part of an
app for monitoring periodic fever.

The healthcare professionals stressed that they would like a simple overview. "What we need is to be able to see an overview of many patients at once in an accessible way and also be able to see specific entries of a child's symptoms on a specific date and be able to look up a specific child so that I can see information about a child that I have under observation." Moreover, when analyzing the needs of the healthcare professionals and the parents combined, there are undoubtedly important aspects that overlap, which is illustrated here by a quote from a parent: "I want to get a good overview of a child's symptoms from day to day" which is echoed by the healthcare professionals. Also: "I would like to be able to see a graph of symptoms from previous months," a comment from the parents and healthcare professionals. Moreover, both stakeholder groups identified that they would like it to be: "very clear whether a child has had PFPFA syndrome on a particular day; it really needs to be crystal clear."

5.4 Overview to encourage engagement

Several parents discussed that an app could help with overview. One parent commented: "It would be an easy way to track the information and to have an overview of the information too. Everything is always there then; there is no way to search a paper." Another parent shared a similar opinion: "App, yes, definitely. More work to write it, and I would lose the paper and forget it at home when I would go to the doctor with my child." Regarding the notion of having margins set within the app with a specific fever margin that could indicate to the parents when to contact a healthcare professional, one parent said that it might be good to have: "It might be good to have, just to be one the safe side if there are any uncertainties and so on, but I am rarely uncertain" While another parent said: "It might be ok, but I do know it so well myself, from years of experience." Yet another parent also thought that others might need it, but not them due to experience: "It might not be so bad to include for inexperienced people, but I do not need it, I know it." These quotes make it clear that the parents are the experts, they know their children, and they have insights that they rely on wholeheartedly. From that, we conclude that the parents are essential stakeholders in a design process where the aim is to aid their care for their children; they have vast experience.

# 6 Discussion

In this paper, we explore how an app can support parents and their children during the
treatment process and how this may affect the boundaries between parents and
healthcare professionals. In this specific context, the children cannot care for
themselves, and the app that connects the parents and the pediatricians, therefore,
becomes a central entity. We argue that the digital symptom tracker can function as a
boundary object and, thereby, an essential part of the treatment process.

As stated earlier, an object becomes a boundary object when it serves as a device for
transformation, translation, and negotiation at boundaries. More specifically, a
boundary object is an artifact with different roles for different groups that might have
boundaries between them. As such, a boundary object can allow groups to unite and
form a functional relationship, and boundary objects are instances that enable groups
that do not share pre-existing consensus, boundaries or professions to consolidate, find
common ground and work together [42, 57, 64-67]. In our case, we illustrate four
specific parts of the app that are essential, which have boundary-crossing activities
connected to them. First, we show that asynchronous communication can create a
bridge between the parents and the pediatricians. Secondly, notifications can increase
compliance in the treatment process, which is in line with [12, 19], who found that
increased collection of PGHD and engagement in self-monitoring is fruitful. Thirdly,
our findings show that visualizations can trigger reflection. Those findings correspond
with the importance of linking personalized disease management to clinical practice
and co-create it in context, as highlighted in prior research [22, 23]. Finally, we show
that providing an overview in the app can encourage engagement, which is illustrative
of how an object becomes a boundary object when it serves as a device for
transformation, translation, and negotiation at the practice boundaries [34-43].

In this paper, we show the nature of the structured support that a mobile application (symptom tracker) can provide. The app and its elements can be seen as a shared object. In such a process, what is needed is a representation, like a model or a physical object, which can serve as a boundary object that binds two partners together to support knowledge sharing and co-creation of meaning [30, 44, 45]. Based on that, we argue that a symptom tracker serves as a boundary object to coordinate and communicate [57]. Boundary objects are the links in the communication processes where different perspectives are to be negotiated and discussed into a co-created meaning and consensus. In layman's terms, boundary objects play an important role as shortcuts to communication and serve as playgrounds for knowledge sharing among different communities of practice [64, 68, 69]. However, boundary objects can only facilitate parts of the communication surrounding the boundary object and cannot be seen as a tool that can function as any replacement [70]. The object itself cannot replace communication and collaboration. We are aware that a symptom tracker cannot, and should not, replace the close collaboration between the parents and the pediatricians in the care of the child. In the literature, boundary objects are often technological artifacts but can also be other types of artifacts. In our case, we use open and emergent boundary objects as the app is still under development.

Awareness and recognition of PFAPA are vital for providing the patient with adequate
treatment and avoiding misdiagnosis. The diagnosis is mainly based on the patient's
medical history and symptoms, but no specific test or clinical process exists to confirm
or deny the diagnosis. Instead, it is necessary to follow the course of the disease over
time [60, 61]. Therefore, a symptom tracker is considered a valuable tool for following
the process, characterizing the fever episodes, and getting an overview of their
regularity. However, it can be challenging for the parents to document and report
symptoms in a structured manner when the symptom tracker is on paper. In line with
prior research, our findings highlight that to fulfill positive outcomes of mHealth apps,
such as improved patient quality of life, alongside more precise and personalized
disease management, they need to be linked to clinical practice and adapted to the
context of both patients and healthcare [22, 23]. A symptom tracker can be used as a
way to gather patient-generated health data, which can help patients organize details
and activities of the illness, increase engagement, and promote patient empowerment
while enhancing adherence to treatment [6, 13]. Data work and datafication in
healthcare extend the longstanding interest related to electronic health records (EHR),
where research efforts have typically focused on large-scale, national standards and
strategic infrastructural changes [18, 71], to emerging technologies developed outside
of healthcare, such as internet of things, wearable technology, fitness, wellness,
preventive care, home care and rehabilitation, where the partnership between
individuals and healthcare providers is important, and toward other types of information
systems that can assist in different aspects of healthcare, such as collaboration and
learning [29]. Our findings confirm and extend prior research regarding self-monitoring
and changes to the role of patients, and the influence of this change on the healthcare
professionals [2, 6].

To sum up, our findings show a need for structured support to be able to build a shared
view of what the difficulties of the treatment process entail. Our analysis further
suggests that an app for tracking the periodic fever of children can play an essential role
in providing such structure and increasing compliance and engagement. The parents are
critical stakeholders in the co-creation process due to their vast experience caring for
their children. As illustrated in our findings, the parents are the experts. They know
their children and have instincts that they rely on wholeheartedly. In all, the
pediatricians, together with the parents, have enabled the co-creation of a symptom
tracker as a boundary object in pediatric care.

7 Conclusion

In this paper, we draw on a project that has the unique value of being the first symptom
tracker to follow children with periodic fever in Nordic countries. There is limited
research on what sets of fever episodes on how frequently they occur. Moreover, there
is little documentation at the moment for tracking these aspects further to revolutionize
the knowledge on what sets of these episodes for children. The children diagnosed with
periodic fever usually stay home more. Their parents are sleepless, but there is another
documented aspect; the children diagnosed with periodic fever (PFAPA symptom) are
generally healthier otherwise than other children their age. Developing an app for
parents of children with periodic fever to document their symptoms would be
revolutionary in the effort of furthering the understanding of periodic fever for children.
Furthermore, the data from the app is shared with pediatricians so that they can monitor
their symptoms. On a theoretical level, our paper contributes with a deeper
understanding of how the co-created symptom tracker can function as a boundary object that binds the children, parents, and pediatricians treating them together.

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