=Paper=
{{Paper
|id=None
|storemode=property
|title=MONARCA: A Persuasive Personal Monitoring System to Support Management of Bipolar Disorder
|pdfUrl=https://ceur-ws.org/Vol-722/paper4.pdf
|volume=Vol-722
}}
==MONARCA: A Persuasive Personal Monitoring System to Support Management of Bipolar Disorder==
https://ceur-ws.org/Vol-722/paper4.pdf
MONARCA: A Persuasive Personal Monitoring System to
Support Management of Bipolar Disorder
Gabriela Marcu Jakob E. Bardram
Human-Computer Interaction Institute IT University of Copenhagen
Carnegie Mellon University Rued Langaards Vej 7, Copenhagen, Denmark
5000 Forbes Ave, Pittsburgh, PA, USA +45 7218 5311
gmarcu@cs.cmu.edu bardram@itu.dk
ABSTRACT multitude of ways. For example, patients and their clinicians
MONARCA is a persuasive mobile phone application de- can use the data to determine the effectiveness of medica-
signed to support the treatment and management of bipolar tions, find illness patterns and identify warning signs, or test
disorder. Behavioral data is monitored through both sensing potentially beneficial behavior changes. Behavioral data
and manual patient input, while timely feedback is provided collected could be used to predict and prevent the relapse of
based on clinical recommendations to help patients adjust critical episodes.
their behavior and manage their illness. This paper presents Despite the plethora of research into personal monitoring
the design process behind the MONARCA system and ini- systems targeting behavior change [8], health-related behav-
tial findings on the challenge of designing a persuasive sys- ior change (e.g., physical activity [5, 1], diet [9], cardiac
tem for the management of bipolar disorder. We discuss rehabilitation [6], and others [3]), and even the management
how difficult the design of such technology has turned out of chronic illnesses (e.g., diabetes [7, 11], chronic kidney
to be, for two primary reasons: (1) the inherent challenges disease [10], asthma [4]), mental illness has remained rela-
of using persuasive metaphors with a complex mental ill- tively unexplored. One explanation for this untapped poten-
ness, and (2) the tradeoffs encountered due to varying, and tial is the complexity and variation of a mental illness like
sometimes conflicting, stakeholder needs. bipolar disorder, which causes uncertainty in how to manage
it. Moreover, there is no simple connection between measur-
Author Keywords able parameters and the course of treatment; mental illness is
Bipolar disorder, mental illness management, user-centered fundamentally complex and is often tied into physical health
design, personal monitoring systems problems as well as social problems. In the MONARCA
project we aim to overcome this challenge by developing a
ACM Classification Keywords system that, through pervasive data collection and feedback
H.5.2 Information Interfaces and Representation: User In- to the patient, supports the treatment of bipolar disorder.
terfaces – User-centered design. J.4 Social and behavioral As such, the MONARCA system can be classified as a per-
systems: Psychology. suasive technology [2], similar to other persuasive health-
related ubiquitous computing systems. The design of such
INTRODUCTION persuasive systems is, however, extremely difficult. It is
Persuasive personal monitoring systems seem promising for very unclear how feedback should be given to the patient in
the management of mental illnesses such as bipolar disorder. order to influence and change behavior. Numerous studies
Bipolar disorder is characterized by recurring episodes of have proven that that trying to change unhealthy behavior
both depression and mania, with treatment aiming to reduce such as smoking, drinking, or lack of exercise is extremely
symptoms and prevent recurrence throughout a patient’s difficult even with the use of intensive counseling. Medicine
lifetime. By applying pervasive healthcare technologies to compliance is also a fundamentally hard problem in
the treatment of bipolar disorder, we can monitor patients’ healthcare. Therefore, it is quite challenging – some would
behavioral and mood data, and provide timely feedback to say naïve – to rely on non-human actors like computers and
them in order to help them adjust their behavior. This data mobile phones to be able to change unhealthy behavior.
supports the treatment and management of the illness in a
In this paper, we describe the user-centered design process
and initial findings on the challenge of designing a persua-
sive system for the management of bipolar disorder. We
discuss how difficult the design of such technology has
turned out to be, for two primary reasons: (1) the challenges
of using persuasive metaphors with a complex mental ill-
ness, and (2) the tradeoffs encountered due to varying, and
sometimes conflicting, stakeholder needs.
METHOD (based on phone calls and text messages). This data is ab-
Patients and clinicians of a bipolar disorder treatment pro- stracted for analysis, to protect the patient’s privacy while
gram took part in an in-depth participatory design process. still supporting self-assessment using objective data.
They were instrumental in decision-making about features
through collaborative design workshops and iterative proto- Historical overview of data
typing. Patients participated in semi-structured interviews The patient and clinician will both have access to the data
about the treatment and management of their own illness to through a web interface. This will give them the means to
further inform the design process. Notes and artifacts from explore the data in depth by going back and forth in time,
these design activities were analyzed for 1) an understand- and focusing on specific sets of variables at a time.
ing of each stakeholder's motivations and needs, and 2)
indicators of tradeoffs that arose in the design of the sys- Coaching & self-treatment
tem. Psychotherapy will be supported through everyday rein-
forcement in two ways. Customizable triggers can be set to
Workshops were held every other week for six months. At
have the system notify both patient and clinician when the
every workshop, 1-3 individuals attended from each of the
data potentially indicates a warning sign or critical state.
following three stakeholder groups: patients, clinicians, and
Second, after patients are advised by their clinicians about
designers. The designers led each three-hour workshop by
which actions to take in response to warning signs, they can
facilitating discussion about particular design goals and
keep track of and review them through the system.
issues; system features and functionality; and feedback on
mockups and prototypes of the system. During initial work-
Data sharing
shops, overall goals of the system were introduced from In order to strengthen the psychotherapy relationship data
both clinical and technical perspectives. Sharing these per- and treatment decisions are shared between the patient and
spectives of the project involved drawing from their respec- his/her clinician. Similarly, sharing data with family mem-
tive best practices: both medically and practically, clini- bers or other caregivers empowers the patient to support the
cians know what works with patients; and designers are treatment process. Finally, sharing data among patients
aware of related systems and technologies. helps with personal coping and management efforts by re-
Design activities at workshops began in the early stages assuring patients that they are not alone, and helping them
with hands-on brainstorming. We provided materials such see how others manage their illness.
as documents summarizing the goals of the system, images
of existing tools and methods, large poster paper, writing CHALLENGES WITH A PERSUASIVE METAPHOR
materials, scissors, tape, etc. The sketches that came out of One of the main original goals of the user-centered design
this initial brainstorming formed the basis for the first process was to design a persuasive system for bipolar pa-
mockups. For the rest of the process, at each workshop we tients, which could help them constantly adjust their behav-
1) discussed a few design goals and system features in ior to manage their own illness. In particular, the design
depth, and 2) received feedback on the next iteration of the process revealed the following three parameters were cru-
mockups. Mockups presented during workshops progressed cial to keeping a bipolar patient stable:
from sketches to wireframes to interactive prototypes. 1. adherence to the prescribed medication – i.e., ensuring
that the patient takes his or her medication on a daily
SYSTEM DESIGN basis
The design process resulted in 5 focus areas for a persua-
sive system for bipolar disorder: self-assessment, activity 2. stable sleep patterns – e.g., sleeping 8 hours every
monitoring, historical data overview, coaching & self- night and going to bed at the same time
treatment, and data sharing.
3. being physically and socially active – e.g., getting out
of the home, meeting with people, going to work.
Self-assessment
Subjective data is collected through a mobile phone using a Now – at first glance, this may seem simple, but numerous
simple one-page self-assessment form. Less than 10 items studies have shown that each of the above three things are
are entered by the patient on a daily basis, including mood, very difficult to achieve for many patients, and achieving
sleep, level of activity, and medication. Some items are all three consistently is inherently challenging in combina-
customizable to accommodate patient differences, while tion with a mental illness. Hence, the core challenge is to
others are consistent to provide aggregate data for statistical create technology that would help – or “persuade” – the
analysis. A simple alarm reminds the patient to fill out the patient to do these three things every day.
form.
Most persuasive health-related Ubicomp systems have
Activity monitoring
adopted different metaphors with the goal of motivating the
Using sensors in the phone, objective data is collected to patient to perform healthy behavior. Examples of such
monitor level of engagement in daily activities (based on metaphors include a garden that grows when the person is
GPS and accelerometer), and amount of social activity physically active; a fish that grows when the person walks
more; and a dog that is happier when the person eats too much time or attention on the clinician's part, the clini-
healthy meals. Common to these metaphors is a simple-to- cians would reject it. An example of one such feature was
understand relationship between behavior (e.g. exercise) the system suggesting that the patient contact the clinic if
and visualizations in the metaphor (e.g. more flowers in the data collected indicated possible warning signs – and mak-
garden). ing it easy for the patient to place this call. The motivation
behind this feature was to encourage the patient to reach out
In the design of the MONARCA project, we tried to adopt for help when needed, but the clinicians ultimately rejected
the same strategy of creating a metaphor. In total of 5 dif- the idea because we could not find a reasonable protocol to
ferent metaphors were tested and tried out in a series of make the benefits to the patient outweigh the burden on the
design workshops. These metaphors included the use of an clinic's resources. Features of the system also couldn't pre-
abstract color picture, a landscape with a river, a dartboard, sent a liability for clinicians, so they were more likely to
a music equalizer, and a scale. The patients and clinicians reject ideas and limit the role of the system to be on the safe
rejected all of these metaphors – one after the other. side. Any kind of text messages or notes written by the pa-
tient and made available to the clinic were kept out of our
Why did this happen? First we thought that maybe we were design, because we could not ensure that the clinicians
just bad at designing the metaphors, and we kept on trying would always read these messages, so we could not make
with new ones. But since it turned out to be a persistent them liable for their content.
“problem”, we think that something more fundamental was
We therefore realized that designing our system with pri-
at stake, which was expressed by one of the patients as:
marily a clinical focus was limiting. The clinicians we
“I do not want my illness to be reduced to a game.” worked with were clearly most comfortable with strategies
that they were familiar with, they had evidence for based on
We think that this is an important insight into the design of their experiences with patients, and were backed by clinical
persuasive technologies for healthcare and self- trials. Deviating from these practices somewhat, and pushing
management. Many of the technologies and metaphors re- our clinicians a little bit out of their comfort zone, enabled
ported so far deal with personal lifestyle related health us to explore other potential strategies, from the perspectives
management, which is fundamentally different from pa- of the patients and the designers.
tients with a diagnosed mental illness. We think that the
design of feedback to the patient needs to follow another An additional example of a debated feature is reported stress
level. A stress level scale was strongly rejected by a clini-
pattern other than using a metaphor.
cian who argued that stress is not a clinically useful meas-
ure, nor is there any clinical definition of stress that would
DESIGN TRADEOFFS
support accurate data collection. Interestingly, a second cli-
During the user-centered design process, we discovered nician was the one who suggested the stress level scale, and
several tradeoffs in the design of the system due to conflict- argued for it from a very patient-centered perspective based
ing stakeholder needs and motivations. These tradeoffs re- in psychotherapy. This clinician found that external stressors
late to the clinical efficacy of the system, the patient’s pri- play a significant part in the mood of her patients, and it was
vacy, sustained use of the system, and other issues. In this useful for her to consider a patient's reported stress level
section, we highlight two of the primary tradeoffs we dealt when assessing how that patient was doing. She also be-
with during the design of MONARCA. lieved that patients would find it useful to assess their own
level of stress, regardless of the fact that they would be in-
Clinically driven vs. patient driven strategies terpreting its meaning for themselves in the absence of a
If a system has a strong clinical focus – meaning that it clinical definition. The patients tended to agree with her, so
adopts only clinically proven treatment strategies – it could although this feature was under debate for several weeks, the
miss out on patient-driven approaches that may be helpful to designers opted to keep it in the design because enough par-
some patients. In addition, the system may also ignore novel ticipants believed there could be personal value in assessing
technological solutions that the clinical field has yet to one's stress.
evaluate. Since our system was designed for a clinical con-
text, it was important that it adhere to clinical practices so The patients were creative in suggesting strategies based on
that it could be evaluated as a valid intervention. In addition, their personal experiences. Knowing what behavioral
considering clinical practices was crucial in designing a sys- changes have worked for them in the past, and imagining
tem to be viable for adoption and acceptance into a patient's what new strategies might work for them, patients explored
treatment, which includes everyday use by the patient and technological solutions unrestrained by considerations of
occasional use by the clinician. clinical efficacy. This unrestrained creativity was productive
during the design process for two reasons. First, it revealed
The clinicians that took part in our design activities shared what would motivate the patients to use the system, which is
with us scenarios, anecdotes, and commonalities about the critical to adoption and acceptance. Second, it helped us
treatment of their patients. We understood the context we realize which measures, though clinically significant, would
were developing the system for by understanding the prac- ultimately fail because they were too intrusive for the patient
tices of clinicians with their patients. A recurring theme was to collect, or were not interesting enough to the patient to
clinicians' limited resources. This turned into a limitation for motivate collection.
the functionality of the system, because if something took
Egocentric patient bias vs. clinician generalizations ACKNOWLEDGMENTS
Although patients provide valuable insights into the experi- This work has been partially funded by the EU Contract
ence of living with and managing bipolar disorder, their in- Number 248545 - MONARCA under the 7th Framework
put tends to be egocentric, since their knowledge about the Programme. We would like to thank our participants for
disorder mostly comes from their own personal experience their contributions to this project and enthusiasm for the
with it. Discussions about the amount and type of data to work.
collect were complex due to the different experiences and
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