=Paper=
{{Paper
|id=Vol-2101/paper2
|storemode=property
|title=HeartMan: (Self-)Managing Chronic Heart Failure
|pdfUrl=https://ceur-ws.org/Vol-2101/paper2.pdf
|volume=Vol-2101
|authors=Jan Derboven
|dblpUrl=https://dblp.org/rec/conf/avi/Derboven18
}}
==HeartMan: (Self-)Managing Chronic Heart Failure==
https://ceur-ws.org/Vol-2101/paper2.pdf
HeartMan: (Self-)Managing Chronic Heart Failure
Jan Derboven
Meaningful Interactions Lab, KU Leuven – imec
Parkstraat 45, 3000 Leuven, Belgium
jan.derboven@kuleuven.be
Abstract. In this position paper, we report on preliminary results from the
human-centered design process in the HeartMan project. The goal of the
HeartMan project is to develop and test self-management technology for patients
suffering from chronic heart failure (CHF). The human-centered design process
within the project aimed to develop and test a mobile app for CHF patients,
focusing on therapy adherence concerning medication intake, physical activity,
nutrition, and mental support. Initial user testing revealed different attitudes and
habits that affected the perception of the “self-management” approach of the
technology. Specifically, test users showed a variety of behaviours in which they
(unconsciously) tended to delegate responsibility to either formal carers (the
cardiologist) or informal carers. In this paper, we describe how the patients’
existing attitudes and behaviours impact their initial perception of the technology
during user tests. In a later phase, the clinical trial will show how the HeartMan
technology impacts these attitudes and habits in the longer term.
Keywords: Healthcare, Self-Management, Chronic Heart Failure,
Human-Centered Design.
1 Introduction
While evolutions in healthcare raise life expectancy, increasing age also results in a
rising prevalence of chronic diseases. In order to prevent or manage chronic diseases,
a healthy lifestyle is required. This is also the case for chronic heart failure (CHF)
patients: they need to adhere to a complex therapeutic regimen. For example, patients
have to take several types of medication at specific times, are advised to engage in
appropriate physical activity, and need to take into account specific dietary advice. Not
adhering to medication intake or dietary advice might endanger the patient.
Technology can be used to provide people with data about their own behaviour.
Personalized feedback can make people more aware of their behaviour, allowing them
to improve or maintain a healthy lifestyle. As such, self-management is an attractive
approach for patient empowerment [4], allowing patients to take control of their
disease, and allowing hospitals to save resources as patients become less dependent on
caregivers [5]. In this paper, we describe test users’ initial response to the HeartMan
self-management technology, and how existing attitudes and behaviour influence these
patients’ perception of the system.
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Proc. of Fifth International Workshop on Cultures of Participation in the Digital Age - CoPDA 2018
Castiglione della Pescaia, Italy, May 29, 2018 (published at http://ceur-ws.org).
Copyright © 2018 for the individual papers by the papers' authors. Copying permitted for
private and academic purposes. This volume is published and copyrighted by its editors.
2 HeartMan
The core of the HeartMan system is a mobile application connected to a wristband
measuring the patients’ vital functions, including heart rate monitoring and variability,
activity monitoring, galvanic skin response and skin temperature. The information
gathered about the patients’ health and activity is processed by mathematical models
that can predict under which conditions the patient’s health or wellbeing is likely to get
worse. When such conditions are detected by the sensors, the application will search
for actions the patient can take in order to prevent such worsening.
In addition to the measurements and the predictive technology, cognitive
behavioural therapy is used to help patients change life-long habits, such as changing
dietary habits, or (a lack of) physical activity. The HeartMan system offers a series of
mental exercises and simple practical exercises that can change the patient’s mindset.
The combination of tracking health data, predictive modelling of the patients’ health,
and cognitive behavioural therapy makes the HeartMan system a technology that allows
for self-monitoring of various therapeutic aspects.
3 Human-Centered Design and Self-Management
3.1 General
Self-management technology has been discussed widely, both in medical and in
Human-Computer Interaction (HCI) literature. During the development of self-
management technologies several barriers and opportunities for the sustainable use of
technologies have already been identified. Examples include the work on diabetes self-
management by Maniam et al. [3], discussing factors for technology acceptance
including financial and privacy aspects, and the work of Doyle et al. [1], emphasizing
the importance of education and goal-setting. Grönvall and Verdezoto [2] have
emphasized the role of the care network in the use and uptake of self-monitoring
technology. In this position paper, we take a similar perspective: we discuss the
perception of self-monitoring, related to the role of other stakeholders in the care
network (especially professional carers and the primary informal caregiver).
3.2 Human-Centered Design in HeartMan
As self-management in healthcare puts the responsibility of adherence with patients, it
is highly important to design self-management technology that is accepted by the
patients and that has the desired effects. To ensure high acceptance and effectiveness,
we implemented an extensive human-centered design process in which we designed
and evaluated the HeartMan technology. After this process, the resulting technology
will be tested by patients in a clinical trial (in the latter half of 2018). Before discussing
preliminary results from the design process, we first discuss the human-centered design
and evaluation process that has been implemented.
9
Proc. of Fifth International Workshop on Cultures of Participation in the Digital Age - CoPDA 2018
Castiglione della Pescaia, Italy, May 29, 2018 (published at http://ceur-ws.org).
Copyright © 2018 for the individual papers by the papers' authors. Copying permitted for
private and academic purposes. This volume is published and copyrighted by its editors.
Diary Studies and Interviews. In order to investigate the users’ everyday lives,
including their specific needs, two studies were carried out in Belgium and in Italy. The
first study was a diary study, in which CHF patients kept a diary containing 10
assignments for a period of 10 to 14 days. The second study was an interview study. In
this study, CHF patients participated in semi-structured interviews that were conducted
at their homes.
The purpose of the diary study was twofold. First, the study allowed participants to
gather data in their own environment and at their own pace, without being affected by
the presence of a researcher. The diary study did not focus on specific single tasks but
rather on a range of everyday activities and habits. General themes included specific
patient characteristics, the patients’ experience, disease management, and their social
network. These diaries allowed for a structured data collection within the participants’
own context. Second, the study sensitized participants with regard to the topics that
were discussed in the subsequent interviews. As interviews often focus on topics that
people do not think about very often (such as the emotional experience of their disease),
it can be hard for interview participants to express themselves. As such, the assignments
in the diary were intended to make participants think about these topics before the
interview, to make them aware of their own experiences, as this would help them to
talk about their world of experience during the interviews.
The interview study dealt with the same topics as the diaries did and aimed to
understand participants’ world of experience, problems and needs into more depth. As
the interviews were carried out in two countries and by 4 researchers, an interview
protocol was used in which the diary assignments served as a guide for the interview.
Iterative Design. Based on the diary studies and interviews, initial designs of the
HeartMan application were made. The designs incorporated specific functionalities
resulting from the user studies described above. For instance, the designs take into
account specific needs concerning lifestyle advice (coping with CHF in various ways)
and disease management (providing educational material and administrative support,
e.g. for doctor’s appointments). These designs were iteratively tested and refined. In
three iterations, user testing was performed on increasingly realistic and interactive
mock-ups and prototypes.
The first iteration focused on information structure and individual screen designs
mock-ups of the patients’ smartphone app. This mock-up was combined with scenarios
of use illustrating how a fictitious patient could use the different functionalities of the
app. The paper prototype mock-ups were evaluated with 9 patients in Belgium and 11
patients in Italy, as well as with 10 caregivers in Belgium and 5 caregivers in Italy.
The second iteration was based on a redesign of the feedback received during the
first round of evaluations. The prototype was redesigned, and tested as a fully
interactive mock-up of the patient app. In this round, the interactive mock-up was tested
by 11 patients in Belgium, and 10 in Italy.
A final testing iteration was performed with the functional Android app (see Figure
1), using fictional scenarios instead of live tracking of the patients’ health data. This
evaluation was performed with 9 patients in Belgium and 9 in Italy.
10
Proc. of Fifth International Workshop on Cultures of Participation in the Digital Age - CoPDA 2018
Castiglione della Pescaia, Italy, May 29, 2018 (published at http://ceur-ws.org).
Copyright © 2018 for the individual papers by the papers' authors. Copying permitted for
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Fig. 1. Screenshot of the final app design (home page). The screen shows the four areas HeartMan
concentrates on: physical activity, nutrition, mental support, and medication.
4 Preliminary Results: Perception of Self-Management
In this section, we present preliminary results from the human-centered design process
leading up to the clinical trial of the HeartMan system. We will focus on the patients’
perception of the HeartMan system, and the benefits it can bring for them. We point
out how for some patients, the perceived benefits were different from the intended
system benefits, and how the dynamics between patient and primary carer played a role
in using the HeartMan system.
4.1 Self-Management and the Primary Carer
In the HeartMan system, the smartphone is the primary device patients use to monitor
their health, their medication adherence, and other parameters. As such, the HeartMan
system was clearly conceived as a self-management system: the patient can interact
with the system to enter health data (blood pressure, weight), and receives
questionnaires and reminders concerning nutrition and medication. Next to the patient
app, the HeartMan system also provides a carer’s app, which provides similar
information for informal carers, but does not provide the patient-specific interactivity
(e.g. entering blood pressure values, completing questionnaires).
However, during user research, it has become increasingly apparent that in some
cases, it is the patient’s primary carer (often the partner) who takes charge of managing
the disease. Often, partners are responsible for administrative tasks, (making
appointments, collecting prescriptions), preparing medication, and taking into account
dietary advice. Many participants acknowledged the central role of their partner in
managing their heart condition in the interviews:
Interview participant 6: “I think, as a patient, if you get lots of support from your
partner, everything is much easier to cope with.”
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Proc. of Fifth International Workshop on Cultures of Participation in the Digital Age - CoPDA 2018
Castiglione della Pescaia, Italy, May 29, 2018 (published at http://ceur-ws.org).
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private and academic purposes. This volume is published and copyrighted by its editors.
Interviewer: “And it sounds like you have that support, right?”
P6: “I won the lottery there.”
P6’s partner: “He doesn’t care much. Medication too, if I don’t set that out for him,
and if I don’t check if he took his medication, they’ll be there in the morning you
know.”
These observations confirm prior work stating that sometimes, control is delegated
to someone close to the monitored person [2]. However, our observations show that
this relation has profound effects on the use of the technology itself. Even during short
user testing sessions, several partners accompanying the patients took a very active role
in the user test, commenting on the scenarios, and even taking the place of the patient,
assuming the role of the primary user. In these cases, the patients’ role was often
reduced to confirming what the partner said, and making some suggestions.
While the purpose of user testing was, of course, to test the app with CHF patients,
the observations described above point towards an interesting dynamic. The HeartMan
app was designed to be a self-monitoring app for CHF patients. However, existing
dynamics between patients and their partners/informal carers suggest that it can be
expected that in some cases, the HeartMan app will be used most by the primary carers,
instead of the patients. As such, these observations show that in some cases, the
technology confirms existing behaviour and social dynamics, rather than changing the
patients’ behaviour. The clinical trial will provide more details about to what extent the
technology will become part of existing power relations between partners, or play a role
in empowering patients themselves.
4.2 Self-Management and Remote Monitoring
User test round 3, participant 7: “The most interesting aspect is that data is transferred
to the hospital, and them monitoring my data remotely.”
While the primary goal of the HeartMan system is self-management of CHF,
relevant data (heart rate, blood pressure) is also sent to the hospital. These detailed data
provide clinicians with more detailed information about their patients, which can
contribute to fine-tuning the patients’ treatment during regular follow-up visits. While
self-management was clearly stressed during user tests as the primary goal of the
system, mentioning data sharing with hospitals had an important effect. For some
patients, the perceived benefit of the HeartMan app was primarily the data sharing with
the hospital. As such, the self-management app was perceived as a remote monitoring
app. For these patients, the main goal was reassurance: data sharing with the hospital
meant that they would be tracked closely.
This perception has two main implications. First, for the setup of the clinical trial: it
became apparent that when contacting patients for the clinical trial, it is important to
clarify the distinction between a self-management app, and a monitoring or emergency
app. Especially the latter includes the expectation that the patient is monitored 24/7,
and that in case of an emergency, caregivers will be notified automatically. The
HeartMan system, as a self-monitoring system, does not include such functionality.
Second, the emphasis on remote monitoring shows how empowerment is not
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Proc. of Fifth International Workshop on Cultures of Participation in the Digital Age - CoPDA 2018
Castiglione della Pescaia, Italy, May 29, 2018 (published at http://ceur-ws.org).
Copyright © 2018 for the individual papers by the papers' authors. Copying permitted for
private and academic purposes. This volume is published and copyrighted by its editors.
necessarily high on the patients’ own agenda. Instead of perceiving the HeartMan
system as a technology for patients to take control of their own disease, the main
perceived benefit of the system is often related to remote monitoring, rather than self-
management. While the system intends to empower patients, the patients’ existing
attitudes and perception of the system emphasize their dependence on the doctor’s
expertise. Rather than empowering patients as actors in their own care, this confirms
patients in their existing attitude, in a more passive role, subject to the professional
caregivers’ treatment.
5 Conclusion
While the HeartMan system is intended as a self-management technology, the human-
centered design process has made clear that even during short user tests, the technology
is quickly inscribed into the patients’ personal situation and habits. In some cases, this
link with existing relations between patient, informal carers, and healthcare
professionals creates a situation in which the technology is appropriated as a tool that
reinforces existing power relations, rather than activating and empowering patients. As
such, the preliminary results from the HeartMan human-centered design process have
highlighted the tension between the designers’ intentions (self-monitoring and
empowerment) and existing behaviours and attitudes (delegating control and
responsibility) as important challenges for the design and adoption of self-management
technology.
6 Acknowledgements
The HeartMan project has received funding from the European Union’s Horizon 2020
research and innovation programme, grant agreement No 689660. Project partners are
Jožef Stefan Institute, Sapienza University, Ghent University, National Research
Council, ATOS Spain, SenLab, KU Leuven, Bittium and European Heart Network.
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Proc. of Fifth International Workshop on Cultures of Participation in the Digital Age - CoPDA 2018
Castiglione della Pescaia, Italy, May 29, 2018 (published at http://ceur-ws.org).
Copyright © 2018 for the individual papers by the papers' authors. Copying permitted for
private and academic purposes. This volume is published and copyrighted by its editors.
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Proc. of Fifth International Workshop on Cultures of Participation in the Digital Age - CoPDA 2018
Castiglione della Pescaia, Italy, May 29, 2018 (published at http://ceur-ws.org).
Copyright © 2018 for the individual papers by the papers' authors. Copying permitted for
private and academic purposes. This volume is published and copyrighted by its editors.