Constructing Identities through Storytelling in Diabetes
Management
Lena Mamykina
1,2
, Andrew D. Miller
2
, Elizabeth D. Mynatt
2
, Daniel Greenblatt
3

1
Department of Biomedical
Informatics,
Columbia University
622 West 168th St. VC5
New York, NY 10032
lena.mamykina@dbmi.columbia.edu
2
GVU Center,
Georgia Institute of Technology
85 5
th
Street NW,
Atlanta, GA 30332
andrew@andrewmiller.net
mynatt@cc.gatech.edu
3
SMART Technologies
3636 Research Rd,
Calgary, AB, Canada
dan.greenblatt@gmail.com


ABSTRACT
The continuing epidemics of diabetes and obesity create
much need for information technologies that can help
individuals engage in proactive health management. Yet
many of these technologies focus on such pragmatic issues
as collecting and presenting health information and
modifying individuals’ behavior. At the same time,
researchers in clinical community argue that individuals’
perception of their identity has dramatic consequences for
their health behaviors. In this paper we discuss results of a
deployment study of a mobile health monitoring
application. We show how individuals with considerable
diabetes experience found a unique way to adopt this
health-monitoring application to construct and negotiate
their identities as persons with a chronic disease. We argue
that viewing health management from identity construction
perspective opens new opportunities for research and
design in technologies for health.
Author Keywords
Ubiquitous computing, reflection, learning, chronic disease
management, diabetes
ACM Classification Keywords
J.3 Life and Medical Sciences: Medical Information
Systems.
General Terms
Design
INTRODUCTION
Healthcare and health management are among the most
pressing issues of the current time. Despite significant
media efforts to raise individuals’ awareness of the need for
healthy lifestyles, epidemics of diabetes and obesity
continue to grow in the US and other industrialized nations.
Not surprisingly, there is a growing effort within different
research communities to develop new methods and
techniques to help individuals gain control over their health
and wellness, manage chronic diseases, and generally adopt
healthier lifestyles and habits.
Researchers in HCI have proposed a wide range of tools to
help individuals manage their health. Often, these
applications couple pervasive and persuasive computing
techniques to encourage individuals to achieve positive
changes in their behaviors and appreciate the effects of
these changes [11, 26, 29]. At the same time, a growing
number of applications focuses on fostering learning and
sharing of experience within patient-centered communities
(e.g. patientslikeme.com and tudiabetes.com).
In our own work, we investigate the potential of computing
technologies to help individuals with diabetes improve
diabetes management skills through reflection on their past
experiences. Our research platform, MAHI (Mobile Access
to Health Information), helped individuals with diabetes
record free-form accounts of their diabetes experiences
(voice, image, text), review these accounts against their
daily blood glucose values, and reflect on the records with
the help of a diabetes educator. Following the general spirit
of probes [16], one of our main design goals was to build
MAHI as an open and flexible application to allow
individuals to develop their own patterns of engagement.
For our first study with MAHI, we recruited newly
diagnosed individuals with diabetes who were attending
diabetes education classes [30]. The study demonstrated
that individuals engaged with MAHI primarily as a
problem-solving tool that helped them to trouble-shoot such
issues as problematic blood glucose (BG) values or
confusing dietary choices. As a result of their engagement
with the application, MAHI users were more likely to reach
their diet management goals and adopt an internal locus of
control than individuals in the control group.
MAHI proved to be successful in helping newly diagnosed
individuals improve their approaches to diabetes
management. However, these results left open the question
of whether MAHI’s impact was specific to this particular
user group or they could generalize to a broader range of
users. In order to address these questions, we deployed

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CHI 2010: Caring for Ourselves April 10–15, 2010, Atlanta, GA, USA
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MAHI with regular attendees of a diabetes support group;
many of them had over 10 years of diabetes experience.
Despite the consistency of the technological platform, this
new user group engaged with the application in a starkly
different way. These individuals collected on average twice
as many records and their average records were twice as
long. At the same time, they showed little interest in using
MAHI for problem solving and trouble-shooting. Instead,
they embraced MAHI’s free-style capture features to record
rich, intensely personal stories, many of which were not
exclusively related to diabetes management.
Our analysis of these stories revealed several distinct
motivations. Some of these stories helped individuals
address their negative emotions and reaffirm their positive
attitude to health management. Other stories helped
individuals re-establish their confidence in their
competence and ability to manage their health. Yet others
helped them to maintain a consistent sense of self, and
create a link to their lives from before they were diagnosed
with the disease. Researchers in social sciences argue that
these three driving factors are the essential components of
constructing one’s identity [15]. As a result, we propose
that the participants used MAHI as a springboard to
construct and negotiate their identity as persons with
diabetes.
Our findings have two important implications. On a broader
level, they present additional evidence that individuals can
successfully adopt a technology even if they interpret it
differently than its designers. In this study, MAHI users
essentially ignored its primary purpose of supporting
reflection and problem-solving. Instead they embraced the
flexible and open-ended nature of interactions possible with
MAHI, thus addressing more relevant for them issues of
identity management. Nonetheless, the intensity and
consistency of their engagement with the technology is a
reliable indicator that the application had a real value.
More specifically, this research demonstrates the critical
role identity can play for chronic disease management.
Researchers in the clinical community argue that
individuals’ self-image and their ability to integrate their
disease with their overall identity have dramatic impact on
their ability to actively manage their health [35]. Yet the
majority of computing applications that support health
management focus on more utilitarian goals, such as
collection and presentation of health records and behavior
change. Our findings suggest that computing technologies
can play an important role in helping individuals address
more subtle, but perhaps more challenging aspects of
diabetes management, such as constructing and maintaining
an identity of a person living with a chronic disease.
MAHI
Design
MAHI [30] was designed as a mobile application developed
for a Nokia N80 phone as its main interaction platform,
complemented by a web-based application. To support
individuals’ reflection MAHI used the photo and audio
capture capabilities of the phone to allow individuals record
anything that was relevant for their diabetes management.
This feature, an ability to make unstructured, free-form
records using voice, image and written text became a
critical affordance of the application in the study we discuss
here; it allowed our users to adopt the application to their
own needs and essentially redefine its nature. A custom-
built Bluetooth attachment for a commercial glucose meter
helped to integrate activity records with blood sugar values.
To further assist individuals, MAHI included features to
facilitate a written discussion with a diabetes educator using
a discussion board.

Figure 1: MAHI
Deployment study
The study we discuss in this paper was primarily designed
to determine whether the results achieved in the first MAHI
study were unique to the newly diagnosed individuals, or
whether they would hold for a broader user base, for
example for individuals with more extensive diabetes
experience (over 5 years).
For this study we recruited attendees of a diabetes support
group, hosted by the Diabetes Education Center in Dover,
NJ. Eight individuals, all core members of the support
group, volunteered to participate in a 12-week study. All
individuals knew each other, and all knew the diabetes
educator who was also the moderator of the support group.
The members of the research team introduced MAHI in one
of the group meetings; all volunteers were given a brief
tutorial on MAHI features. All the participants were
interviewed upon the completion of the study to assess their
experience with the application.
During the study individuals collected a significant number
of records (over 95 records per person on average, with the
total of close to 600 records). All these records were
analyzed using methods common for the Grounded Theory
approach [34]. At the beginning of our analysis, we
attempted to use the coding scheme developed in our earlier
studies of the newly diagnosed individuals. However, it
became quickly apparent that this coding scheme was not
sufficient to account for the new patterns within this data.
As a consequence, all the records were re-analyzed using a
bottom-up, inductive analysis approach allowing for the
categorization scheme to emerge from the data. As a result
we identified storytelling as the main genre of individuals’
interactions with MAHI and came up with 12 general
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