MEDICAL MAPPING METHODS:
DESIGNING INTERACTIONS FOR SELF-CARE
By
Nathan Edward Winkel
BFA, Cornish College of the Arts, 2005

A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE
REQUIREMENTS FOR THE DEGREE OF
MASTERS OF APPLIED ARTS
in
Design

EMILY CARR INSTITUTE OF ART + DESIGN
2008

© Nathan Edward Winkel, 2008

ABSTRACT
This project addresses how information and interaction design can create new
data collection and interpretation methods that will improve individual efficacy in the
management of the chronic illness type 2 diabetes.

Medical journaling is an important method of recording and tracking the diabetes
condition. Diabetics who journal to self-manage their condition can prolong their lives,
gain a better understanding of their disease, and communicate more effectively with
medical professionals.

To address these issues, this project aims to create a software journaling
application on a hand-held personal digital assistant (PDA), where diabetics can journal
their day-to-day health-related information, such as blood glucose, diet, exercise and
medications. Once data is input into the application, individuals can output the data
in the form of visual maps. This allows the individual to look for patterns and trends in
the hope of discovering something new about what works for managing the condition.
Since health literacy and numeracy are issues for some, the use of an iconic visual
language to navigate the user interface makes this application simple, easy to use
and interactive. The individual’s effortless gathering of personal data and the ability
to see that data in new visual forms offers an alternative to current self-management
systems.

ii

TABLE OF CONTENTS
Abstract ......................................................................................................................ii
Table of Contents .......................................................................................................iii
List of Illustrations ...................................................................................................... iv
Preface .......................................................................................................................v
Acknowledgements ....................................................................................................vii
Dedication ..................................................................................................................ix

1.0

Introduction ...................................................................................................1

1.1

Research Methods ........................................................................................3

2.0

Diabetes ........................................................................................................5

2.1

Diabetes Facts .............................................................................................. 6

2.2

CheckUps and Reminders ............................................................................ 7

2.3

Diabetes Care ............................................................................................... 8

2.4

Current Self-Management Methods ..............................................................10

2.5

Health Literacy ..............................................................................................15

2.6

Pictographs ...................................................................................................18

2.7

Self-Management and Mapping ....................................................................21

3.0

Information and Interaction Design ............................................................... 26

3.1

Application Design Explorations ................................................................... 30

3.2

Application Design Solution (Ongoing) ......................................................... 33

3.3

Output Maps ................................................................................................. 38

3.4

Conclusion .................................................................................................... 46

References .................................................................................................................47
Appendices ................................................................................................................ 53
Appendix A: Letter of Invitation ..................................................................... 53
Appendix B: Information Sheet ..................................................................... 54
Appendix C: Subject Information and Consent ............................................. 56
Appendix D: Sample Questions .................................................................... 59

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LIST OF ILLUSTRATIONS
Fig. 1

Handwritten logbook ....................................................................................11

Fig. 2

Microsoft Excel worksheet ...........................................................................13

Fig. 3

SiDiary software for Windows Mobile Software............................................13

Fig. 4

Diabetes class worksheet ............................................................................14

Fig. 5

Pictograph studies .......................................................................................19

Fig. 6

Pictograph sequence mapping .................................................................... 21

Fig. 7

DIABASS desktop software ......................................................................... 22

Fig. 8

Diabetes Logbook X .................................................................................... 22

Fig. 9

Mental Health Services diagram ..................................................................23

Fig. 10 E-Commerce map ........................................................................................24
Fig. 11 Information Anxiety ...................................................................................... 25
Fig. 12 Transforming data into wisdom ....................................................................27
Fig. 13 Transforming data into action ...................................................................... 28
Fig. 14 Interaction Design Cycle ..............................................................................29
Fig. 15 Graphic user interface atlas .........................................................................30
Fig. 16 Early interface exploration ........................................................................... 31
Fig. 17 Further interface exploration ........................................................................32
Fig. 18 Navigating the interface: blood glucose .......................................................33
Fig. 19 Navigating the interface: diet ....................................................................... 34
Fig. 20 Navigating the interface: exercise ................................................................35
Fig. 21 Navigating the interface: medication ............................................................36
Fig. 22 Blood Glucose Map ......................................................................................44

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PREFACE
A dear friend of mine passed away from type 1 diabetes. I often encountered him
in a state of low blood sugar and would immediately give him some juice or a piece of
fruit to bring his blood sugar into a normal range. He would comment on how difficult
it was to manage his condition—what not to eat, when to eat and when and how much
to exercise.

He was very athletic and seemed to eat very healthily, but no matter what he did,
his blood sugar levels always seemed to be out of control. Sometimes he would be
very depressed about managing and coping with his condition. He was so frustrated
that even though he tried diligently, he still experienced no real results. His doctors
wanted him to keep a detailed journal of his blood glucose levels and diet. My friend
found this difficult to accomplish given his lifestyle.

The recording and tracking became a job in itself, on top of his day job and his
student life. Sometimes he wouldn’t check his blood glucose levels because he couldn’t
afford the test strips at a dollar apiece. At other times, he failed to journal because he
didn’t want to be reminded or bothered by his condition.

Sadly, in his case, depression and the difficulties of self-management got the
best of him, and he passed away last year. As a good friend, it was difficult for me to
even fathom what he was going through. I know he was disappointed that people didn’t
seem to understand the specifics of his condition. I wish I knew then what I know now;
perhaps I could have helped him more. His story is my project.

What if, instead of a detailed, hand-written journal he could have mapped out
his blood glucose levels and dietary intake in the form of a visual road map? By this
I mean a road map that he could reference and use as a reflective tool to identify
patterns and trends in his blood glucose levels, diet, exercise regimen and medication
dosages. Though he once recorded 15 days of his blood glucose levels, insulin intake
and diet, he could not “read” a pattern in the data. While his doctor wanted him to
journal consistently, my friend reported getting nothing out of this activity.

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Therefore, my goal with this project is to employ the principles of effective
information and interaction design to facilitate self-care management for people
living with type 2 diabetes.1 In proposing a software application for a PDA in which
the user generates data input/output as visual road maps, the intention is to reduce
the complexity exhibited in the current text/numeric systems to enable ease of use in
learning about self-care and efficacy.

1

The reason for choosing type 2 diabetes for this project instead of type 1 is because
of the increase in newly diagnosed type 2 diabetics. Furthermore, the majority of
people living with diabetes are those who are type 2.
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ACKNOWLEDGEMENTS
I wish to acknowledge and extend my heartfelt gratitude to the following persons
who have made the completion of this master’s thesis possible. Without them, I could
not have completed this project.

To Dr. Ron Burnett, for his many lectures in his Research Methods course, and
for his encouragement and support. To all my fellow first-year design peers, Sarah
Haye, Hélène Day Fraser, Jamie Barrett and David Humphrey, who all joined me on
this trek through times of crisis to the big “ah ha’s.” Thank your for all your support and
friendship. To all of the other first-year peers in the Master of Applied Arts program,
Ross Birdwise, James Chutter, Jason Dasilva, Katrín Svana Eybórsdódttir, Jay Gazley,
Kathryn Mussallem, Vytas Narusevicius, Dasha Dana Novak, for all your friendship
and support over these past two years. To all my second-year design peers, in
appreciation of all the discussions as this project progressed. To Dr. Maria Lantin, who
in the beginning helped me explore my ideas. To Louise St. Pierre, who throughout
this project cheered me on and told me, “You can do it.” Thanks for the motivation. To
Kenneth Newby, for all his discussions in his Interactivity course, and for his meetings
of support and inspiration. To Karrolle Wall in the Writing Centre and her Thesis
Writing course. Also, especially to Jane Slemon, for hours of editing and helping to
improve my writing skills. This paper would not be in the state it is now without all your
wonderful help. To Signals Design Group, which I had the pleasure of working with for
my summer internship, and which helped me explore and inspire many ideas that went
into this project. To Catherine Warren and Brandi Sunby, who made the connection
and relationship with Signals Design Group possible. To Emily Carr’s Communication
Department faculty members and staff. And to my two professors at Cornish College
of the Arts, Claudia Meyer-Newman and Emilie Burnham, for your great feedback and
encouragement.

To the Canadian Diabetes Association, Vancouver branch, Ivanka Lupenec,
Rachel Clark, Franca Lattanzio, Tony Smithbower, Tracy Cromwell and Susan
Ferguson and others, without whose help and inspiration this project wouldn’t have
been possible. Also, to all the participants that I worked with over the course of the
year, those I can’t name, but you know who you are. Thanks for all your wonderful help
vii

and your great insight into this project. To Sharllen Herrman and Dan Metzer of the BC
Children’s Hospital, thanks for your discussions and great feedback. To Dr. Ivy Zhang
of the Peace Arch Hospital, in appreciation of your contributions to this project. And
also to Jennifer Cabralda, Roger Brownsey, Pamela Lutley and Kenneth Maddan for
all your help.

To Liz Sanders, who greatly offered her feedback and insight into my project
and who also connected me to Marco De Polo with Roche Pharmaceuticals. This
relationship offers many further possibilities for this master’s thesis project. To Marco
De Polo and the others at Roche Diagnostics for giving me the chance to present my
ideas and have the opportunity of working with you towards innovation in diabetes
care. Thank you.

To Roy Prosterman, Emeritus Professor of Law at the University of Washington,
who helped in countless hours of discourse and encouragement throughout this project.
Your help has been greatly appreciated.

To Belinda Lovett, who added professional editing skills to thesis paper. I
appreciate all your great efforts in helping to move this paper towards publication. Also
to Albert Hsieh, who helped to make this project in a working digital form. Thanks for
your great work.

Last but not least, this thesis could not have been produced without Deborah
Shackleton, who not only served as my graduate supervisor but also encouraged and
challenged me throughout my academic program. It’s been a great journey of learning.
Thank you.

viii

DEDICATION
In remembrance of my great friend Jacob.

Dance dance dance, Jacob, forever.

ix

1.0

INTRODUCTION

This paper addresses the question, how can information and interaction design
create a new data collection and interpretation method for improved individual efficacy
in the management of the chronic illness type 2 diabetes?

The practice of self-management of chronic diseases like diabetes has become a
growing issue for those with the disease, because self-management is possible, but for
some is difficult. For many, studies show a decrease in success of self-management
as stresses accumulate due to a lack of communication with medical professionals and
health educators, navigating a complex medical system, health literacy issues and the
need to learn new technologies for self-management (Albarran, Ballesteros, Morales, &
Ortega, 2006). Some people actively resist help because the communication between
the individual and medical professionals, family and friends can be complicated; even
an overly supportive family can lead to a downward spiral as one is reminded that
he/she is ill. Doctors typically ask diabetics to journal their condition as a method
of recording information for reflective purposes (this methodology is also seen as a
form of storytelling). Current journaling methods, which consist of handwritten diaries,
Excel spread sheets, cell phones, PDAs, computer software applications and online
services, can serve to highlight patterns and trends. However, these methods can fail
to motivate (Polonsky, 1999). While these systems can give the medical professional
something of an overview, they can fail to serve the individual doing the journaling in
terms of illuminating patterns and trends occurring in the treatment and responses of
type 2 diabetes.

Present journaling methods, as designed, have shortcomings. What are needed to
further empower diabetics are innovative designs that give both doctors and individuals
visual road maps that could potentially give insight into the individual’s condition. This
visual map could become a language shared between the diabetic and his/her health
care consultants. In the medical field, studies show nearly half of all North American
adults have difficulty understanding and using health information as the language
becomes increasingly complex (Pawlak, 2005). Tools for journaling have long been
put into practice and have worked to a limited extent. Currently the possibilities exist
for interaction design with the use of technology to greatly improve the techniques of
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journaling for type 2 diabetes. Studies in other areas of health care have shown that
mapping and the use of pictographs to illustrate trends and patterns of treatment and
response enhance an individual’s understanding of his/her condition (Hill & Roslan,
2004). A combination of visual, written and verbal information can lead to better recall
and adherence in management since the diabetic can call upon the information and
see patterns in it, potentially improving health outcomes.

Currently there is much research being done in the area of self-management for type
2 diabetes. The 2008 International Consumer Electronics Show (CES), a yearly event
that showcases new innovations in platforms, products and technologies, introduced
a number of concept prototypes for diabetes self-management. For example, the use
of touch technology provides new ways to navigate a screen space, making it more
tangible for the user. New symbol systems in the form of desktop widget applications 2
offer simplified versions of larger applications. Advancements in mapping technologies
are also enabling doctors to map the brain’s functions as medical infographics. This
is a project that is at the interface of medical science and design and runs parallel to
the research of other institutions looking into self-management for diabetes. RED, an
initiative of the UK Design Council, has a project titled ActiveMobs, which promotes a
healthy lifestyle. As well, RED has a diabetes agenda that employs design innovation
for self-management (Red Design Council, 2006). Roche Pharmaceuticals in Palo
Alto, California, has an incubation design lab that is focusing on diabetes as a lifestyle
management issue. In my discussions with them, I have learned that there is a need
to move diabetes care beyond the blood glucose meter to a life-coaching design
intervention.

This project aims to create a software journaling application on a hand-held
PDA, whereby those with type 2 diabetes can journal their day-to-day health-related
information, specifically blood glucose levels, diet, exercise and medications. While
inclusion of subjective factors such as stress, sleeping patterns and even emotion and
pain levels is desirable, due to the scope of this project this design application will focus

2

A small, specialized graphical user interface application that provides some visual
information and/or easy access to frequently used functions such as clocks, calendars,
news aggregators, calculators and desktop notes (Widgets, 2008).
2

solely on the four trends above, because studies show that successful management of
these can dramatically influence long-term outcomes (Polonsky, 1999). (The application
discussed here would also be compatible with the use of a laptop or desktop computer,
although this would reduce mobility.)

In using the application, the diabetic would input his/her day-to-day health data
using the proposed device’s visual iconographic navigation system and output the data
as maps. To map is to plan, organize and methodize the representation of facts of
one’s condition, making the information more accessible. This transforms the data into
a visual format that is represented in a simple, understandable and digestible form.
Robert Horn states, “There is always something satisfying when we can see—actually
visualize—what and how we are feeling and thinking through mapping” (Horn, 2000).
The design intent is to offer the individual an alternative to current self-management
methods and in so doing, could enable the user’s ability to draw connections and see
patterns and trends in his/her condition. Using visual aids in combination with text to
represent, or map, what has up to now been text- and jargon-heavy should mean that
diabetics can access, retain and interpret information with much greater ease. Data
represented as maps creates a visual story of their condition, one that can be shared
with friends, family and medical professionals.

1.1

RESEARCH METHODS

The research methods for this project began by creating a research plan that
outlined primary and secondary goals which included many questions. A few of these
questions were:

• How can design contribute to the current data collection methods?
• Could the journaling method become a mapped out process offering a visual
road map for the individual?
• How will making the data visual, affect and benefit people living with diabetes
and their relationship with medical practitioners?

Primary goals were to create a hand-held PDA that one who is diabetic could track
and record their day to day health information. In the creation of the application current
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self-management methods would be explored. Secondary goals included exploring
an iconographic navigation interface that would address health literacy and numercy
issues, and creating an interactive device that is functional and easy to use. Objectives
focused on conducting concept prototyping with participants to gain feedback on
manoeuvring the iconic interface. Working with diabetics I wanted to gain insight into
how often diabetics journal, what they journal and what the pros and cons are of what
is normally for some, a tedious task for self-managing the diabetic condition.

The three main areas of study for this project included: primary diabetes research,
secondary diabetes research and primary design research. Primary diabetes research
consisted of attending an educational course at the Vancouver General Hospital,
Diabetes Care Centre, where I was able to gain great insight into diabetes prevention
and self-management. In order to gain knowledge from the medical professionals I
conducted various interviews that included doctors, nurses, counselors, diabetes
researchers and educators. To explore the topics of diabetic self-management and
journaling first hand, I volunteered at the Canadian Diabetes Association (CDA). In
order to conduct primary research, I participated in an ethical review process, which
allowed me to interview a small sample population of type 2 diabetics. I also conducted
concept prototyping gaining feedback from the small sample population.

Secondary diabetes research included various articles and essays from medical
journals which gave me insight into the facts and figures of the diabetic condition.
I was also able to understand the economic realities of managing diabetes. Further
research highlighted key issues of the diabetic condition such as the importance of
self-management and journaling including the numeracy and literacy challenges
associated with diabetic self-care.

Primary design research included exploring the following design topics:
iconographic research, software interface design, information design, interaction design,
concept mapping and pictographic mapping methods. Further, research explored
current self-management methods for diabetes such as medical devices, paper logs,
computer applications, cell phone and PDA applications, as well as dynamic media
websites.

4

2.0

DIABETES

Diabetes is a chronic condition in which the pancreas does not produce enough
insulin, or in which the body doesn’t use insulin effectively. Hyperglycemia and other
related disturbances in the body’s metabolism can lead to serious damage to many
of the body’s systems, especially the nerves and blood vessels. There are two main
types of diabetes: type 1 diabetics are people who produce little or no insulin and need
daily injections of insulin to survive, whereas people with type 2 cannot use insulin
effectively. Type 2 diabetics can often manage their condition with lifestyle changes
alone but may also use oral drugs, and sometimes insulin, to maintain good metabolic
control. A third type of diabetes, gestational diabetes mellitus (GDM), develops during
some cases of pregnancy but usually disappears after pregnancy.

According to the World Health Organization (WHO), some common symptoms of
type 1 diabetes include “excessive thirst; constant hunger; excessive urination; weight
loss for no reason; rapid, hard breathing; vision changes; drowsiness or exhaustion”
(World Health Organization [WHO], 2006). Type 2 diabetics have similar symptoms but
usually not as noticeable. Many diabetics with type 2 have no symptoms and usually
are diagnosed after many years of onset. Indeed, almost half of all people living with
type 2 diabetes have no idea that they have this life-threatening condition. About 90%
of diabetics are type 2; nearly all of the remaining 10% are type 1 (Canadian Diabetes
Association [CDA], 2008a).

Diabetes is one of the toughest illnesses to manage. For most people living with
diabetes, self-management is difficult. The diabetic’s ability to self-manage may even
be decreasing. As Dr. Polonsky observes, “diabetics are at war with their diabetes—and
they are losing” (Polonsky, 1999). Even though there have been advancements in newer
treatments and methods for diabetes care, Dr. Polonsky states that “diabetes self-care
seems to be getting worse and worse.” Another study concludes that “diabetes and its
complications are responsible for a tremendous individual and public health burden of
suffering at the present time, and the epidemic is projected to continue into the future”
(Norris, Lau, Smith, Schmid, & Engelgau, 2002).

5

2.1

DIABETES FACTS

In the year 2000, the World Health Organization named diabetes an epidemic.
The International Diabetes Federation’s campaign Unite for Diabetes claims that each
year, more than 3.8 million people die from diabetes-related causes. This comes to
approximately one death every 10 seconds. This silent epidemic claims as many lives
annually as HIV/AIDS (Unite, n.d.). The WHO also estimates that more than 180 million
people worldwide suffer from diabetes, which is predicted to double by 2030 (2006).

One of the contributors to diabetes is obesity-related issues (Obesity Society,
2008a). Currently, more than 64% of US adults are obese or overweight (Beals,
n.d.). Diabetes affects 7% of the North American population, or 20.8 million people
(International Diabetes Federation [IDF], n.d.a).

More than 90% of all cases of type 2 diabetes involve obesity or physical inactivity
(Obesity Society, 2008b). Because diabetes is so closely linked with obesity, there is a
related need to improve health literacy in terms of nutrition information, diet, exercise
and informed lifestyle decision making.

Many organizations are currently working on diabetes health literacy issues.
These include both the Canadian and American Diabetes Associations, The World
Health Organization (WHO) and the International Diabetes Federation (IDF). These
organizations are running various campaigns to raise diabetes awareness and
encourage prevention. Diabetes Action Now is a joint initiative by IDF and WHO. The
goal of the program is to stimulate support for prevention and control of diabetes and
to increase global awareness about its complications.

The growing number of people being diagnosed annually also results in an
economic burden. According to the American Diabetes Association (ADA) website, in
the US alone, the total estimated cost of diabetes in 2007 was $174 billion. The ADA’s
research shows that 50% of the medical expenditures were hospital inpatient care.
Individuals living with diabetes spend, on average, approximately $11,744 per year.
Furthermore, people living with diabetes have medical expenses that are approximately
2.3 times higher than people who don’t have diabetes (American Diabetes Association
6

[ADA], 2008). Also, the study revealed that approximately one of every five health
care dollars spent is attributed to diabetes treatment. By 2025, the estimated diabetes
health care expenditures in the US will exceed $302.5 billion (IDF, n.d.). In Canada,
the estimated total diabetes health care costs are $13.2 billion a year and are expected
to increase to $15.6 billion by 2010 and $19.2 billion by 2020 (CDA, 2008d). North
America faces a huge burden in future years dealing with diabetes. This is why new
methods of diabetes care could significantly lower health care costs. The ADA notes
that almost all of the dollars spent on diabetes care services are due to diabetics who
are dealing with long-term complications such as heart disease, stroke, kidney disease
and amputations.

2.2

CHECKUPS AND REMINDERS

Normally, diabetic individuals, after diagnosis, will go to their doctor for checkups.
The doctor usually requires the individual to track and record his/her condition. Most
diabetics use a handwritten journal or diary, which is reviewed by the doctor. Once
reviewed, the doctor can assess and offer referrals for more specialized doctors if
long-term symptoms occur. Long-term symptom detection is very important for people
living with diabetes. As with HIV/AIDS, diabetics don’t die of diabetes, but rather the
complications. Up to 50% of individuals with type 2 diabetes have complications at
diagnosis (Bailey, Del Prato, Eddy, & Zinman, 2005). Most of the complications for type
2 diabetes are attributed to a lack of glycemic control (through insufficient blood glucose
testing, inappropriate diet, paucity of exercise and lack of medication compliance). The
eight major complications for type 2 diabetes, as stated by the ADA (n.d.), include:

• Heart disease,
• Stroke,
• Kidney disease,
• Eye complications,
• Neuropathy and nerve damage,
• Foot complications,

7

• Skin complications and
• Gastroparesis.3

When any of these symptoms occur, they indicate that diabetes care is not
working for the individual. This is usually due to self-management and non-compliance
issues in terms of recording and tracking blood glucose levels, diet, exercise and
medications on a daily basis. The journaling, if kept up consistently, becomes a tool
for the doctor and the diabetic to review protocols for self-corrective behavior. The
doctor can look for patterns and, if needed, refer the diabetic to specialists to deal
with the complications. However, in not providing a comprehensive journal, physician
checkups typically consist of either too much verbal information or too little information.
This makes it difficult for the doctor to offer suggestions for the needs of the individual,
including essential referrals (Polonsky, 1999).

Self-management by journaling is the key to avoiding long-term complications. If
one journals and shows it to the medical professional, it helps facilitate communication
between the two and helps ensure that they are both on the same page in managing the
condition. Long-term complications are usually due to poor monitoring of blood glucose
readings that are outside of the permitted target range for maintaining homeostasis; this
may signal irreversible damage. Not maintaining glycemic control and management is
the most important predictor of many of the chronic complications of diabetes (Norris
et al., 2002). Homeostasis control can be achieved by monitoring blood glucose levels,
diet and exercise. Indeed, evidence suggests that introducing and maintaining proper
diabetic care can lead to long-term reversal of the condition for a significant number of
type 2 diabetics (Polonsky, 1999).

2.3

DIABETES CARE

Self-management is a cornerstone of diabetes care, and it is believed that improving
individual self-efficacy (self-confidence) is a critical pathway to improved management
(Sarkar, Fisher, & Schillinger, 2006). Since the 1930s teaching individuals to manage

3

Gastroparesis, also called delayed gastric emptying, is a medical condition consisting
of a partial paralysis of the stomach, resulting in food remaining in the stomach for a
longer period of time than normal (Gastroparesis, 2008).
8

their diabetes has been considered an important part of the clinical management of
diabetes (Norris et al., 2002). Studies mention four important aspects of care that must
be managed correctly to maintain glycemic control: glucose levels, diet, exercise and
medications (Sarkar et al., 2006). Optimally, if these four levels are self-managed
effectively, the result can be healthier outcomes and fewer complications long term.
The United Kingdom’s National Health Service (NHS) estimates that 90% of diabetic
health care takes place in the home or through self-management (NHS Choices,
n.d.). Yet many with diabetes never receive any formal training in diabetes care or
glycemic control. Some don’t know how to use blood glucose readings to adjust their
medication, their exercise plan or their diet planning (Polonsky, 1999). (Many don’t
even know they are predisposed to diabetes.) Education on how to manage diabetes
is very important to attaining healthy outcomes. Improvements of glycemic control and
effective knowledge of diabetes and continued education are integral to comprehensive
diabetes care (Norris et al., 2002).

Studies suggest that once diabetics have been educated and informed about
their condition, they face decisions about changing their lifestyle toward a much more
controlled self-management practice. Yet some diabetics are not willing to change their
present lifestyle (Polonsky, 1999). While treatment, combining medication and lifestyle
adjustments can manage type 2 diabetes, success largely depends on the individual’s
ability to accept his/her condition and actively self-manage it (Thoolen et al., 2007).
Indeed, as noted above, for some there can be permanent reversal of the condition.
The Canadian Diabetes Association recommends assessment of each individual’s
self-management skills and knowledge of diabetes at least once a year, meaning a
thorough check of what’s working and/or lacking in that individual’s treatment plan and
education regarding diabetes (Norris et al., 2002).

However, when using present methods, other studies have been guarded in
their conclusions as to benefits of individual self-management in combination with
consultation with medical professionals. One study found that “interventions to improve
self-management have had some success in improving individuals’ lifestyles and have
also led to significant reductions in cardiovascular risk factors; however, improvements
have generally been small and short lived, disappearing once intensive contact with
professionals is removed” (Thoolen et al., 2007).
9

A point that should not be confused with self-management is self-efficacy, or selfconfidence. As Sarkar, Fisher and Schillinger describe it:
The concept of self-efficacy is based on social cognitive theory, which
describes the interaction between behavioral, personal, and environmental
factors in health and chronic disease. The theory of self-efficacy proposes
that individuals’ confidence in their ability to perform health behaviors
influences which behaviors they will engage in (2006).

The study they conducted suggests that, because of the many barriers to effective
self-management that individuals cope with, interventions must address self-efficacy
within the context of the individuals’ environment (Sarkar et al., 2006). Furthermore, this
study concluded that self-efficacy is significantly associated with “diet, exercise, selfmonitoring of blood glucose and foot care.” Designing of self-management methods that
specifically target self-efficacy may motivate the individual to self-manage. However,
as the study suggests, improvements in care and management last only as long as
checkups with medical professionals. Being in constant communication with medical
professionals allows valuable feedback to the individual by suggesting small lifestyle
changes that could be beneficial to maintaining glycemic control.

2.4

CURRENT SELF-MANAGEMENT METHODS

Maintenance of one’s health is the key to a successful outcome for people
already living with diabetes. Methods such as diet planning and being physically active
help the diabetic to live a healthy lifestyle. The best way to self-manage is to keep
track of specific day-to-day information such as blood glucose levels, diet, exercise
and medications (CDA, 2008b). Studies have shown that goal setting and planning are
also very beneficial for maintaining lifestyle changes (Thoolen et al., 2007).

Through my research and interviews with medical professionals, I have learned
that it is recommended that diabetics keep a logbook, or a journal (Fig. 1, next page).
Important to the maintenance of glycemic control is the tracking and recording of dayto-day diabetic information. Once recorded, the journal is often shown to medical
professionals to review and to provide feedback for improving self-management. Most
logbooks or journals take the form of handwritten diaries that document in numeric
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Date: __________________________________

M
O
N
D
A
Y

Time:
Glucose

Protocol:____________________

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Insulin
Carbohydrate
Exercise

T
U
E
S
D
A
Y

W
E
D
N
E
S
D
A
Y

T
H
U
R
S
D
A
Y

Time:
Glucose
Insulin
Carbohydrate
Exercise
Time:
Glucose
Insulin
Carbohydrate
Exercise
Time:
Glucose
Insulin
Carbohydrate
Exercise

=`^%( Handwritten Logbook

form blood sugar levels charted by day, week, month and time of day. There is also
journaling software. Some diabetics use Microsoft Excel spreadsheets, others employ
proprietary applications for computers, cell phones and PDAs. Other systems use
online websites that send the data input directly to medical professionals. Some of
these online web services include SiDiary, Dia-log.com, Diabetes Logbook X and
LogbookFX. An example of this type of system is “Life Stat,” which uses a cell phone
linked by Bluetooth 4 technology to a blood glucose meter. The meter takes the blood
reading, which is then transferred via Bluetooth to the cell phone and then transmitted
to an online database that keeps track of the readings. Once recorded, the data can
be reviewed for assessment using the internet. The key feature of this system is that it
can alert medical professionals, friends and family if blood glucose levels are not being
maintained.

Handwritten journals can be tedious and hard to fill out. As can be seen in Figure
1, how does one use this form without instruction? As shown, there are 24 hour intervals
4

Bluetooth is a wireless personal area network (PAN) that provides a way to connect
and exchange information between devices such as mobile phones, laptops, personal
computers, printers and digital cameras over a secure, globally unlicensed shortrange radio frequency (Bluetooth, 2008).
11

illustrated. This could be confusing for those who are used to a 12-hour format. Another
point that could lead to confusion is the unit of measurement; this is not explained
anywhere on the sheet. Lastly, once the journal is completed, how would one decipher
the numbers to gain knowledge of his/her condition from this information? In most cases
the medical professional would then be the only one able to interpret this information.
The drawback is that the individual does not engage in the process of journaling and
therefore be more responsible in monitoring their condition. Upon interviewing a small
sample population, a common theme emerged, namely the challenge of maintaining a
handwritten system. Other themes reported were the cumbersome nature of carrying
around a diary, and the risk of leaving it at home. This group also mentioned that if they
were to use an online service they would still need to record data (though in a different
way and with different problems). For example, if they went out to lunch, they would
need to remember what they ate and then input the data into a computer after the
fact. The majority of the participants interviewed described how they will often forget
what they ate and are then discouraged to input the data online or into a spreadsheet
application.

Although there are a few mobile journaling applications presently, most lack the
ability to journal easily. Some are very confusing, having too many options, and too
many levels of information, making it hard to “get in and get out” of the application. Most
diabetics get discouraged if they have to spend too much time with self-management.
Individuals will journal for a few days and then get tired and/or forget to keep up with
the task. As can be seen in Figure 2 on the next page (an example of a spreadsheet
application), using this method can be confusing for some with numeracy and literacy
challenges. As Figure 3 illustrates, also on the next page, navigating this application
may be difficult, and the information as represented may be interpreted erroneously.

Medical professionals, such as dietitians, may in most cases review journals to
gain a better understanding of what foods have been consumed. They compare the
diet data with blood sugar levels to see patterns or trends. They then offer advice or
feedback on diet or lifestyle changes. Doctors and diabetes educators suggest that
individuals themselves look for patterns and trends in their condition in the hope of
identifying what works or doesn’t in managing the condition.

12

=`^%) Microsoft Excel Worksheet

Due to the inability to acquire copyright
permission the image shown here has been
removed
The image consisted of mobile phone journaling
software, allowing an individual to input blood
glucose and dietary information. The interface
for this software appeared complex, allowing
too many options to make selections. For some
this software could seem confusing and hard to
navigate.

=`^%* SiDiary software for Windows Mobile Software
My discussions with the sample population revealed a common difficulty in
identifying patterns and trends. Numeracy is an issue with diabetes. Most of the
information that needs to be recorded in these journals is in the form of numbers. It is
crucial to record these number ratings correctly and to interpret them effectively in order
to make appropriate decisions for controlling the condition. This makes it extremely
difficult for people who don’t have the necessary skills to review various numbers on

13

a page in their journal and to interpret them to see trends in management such as diet
compliance. Some individuals interviewed mentioned that they do not get anything out
of doing this exercise and that they are journaling only because their doctor asked them
to. Most journals look like an accounting system such as a bank statement. However,
in order to know your bank balance, you need to be able to reconcile your debits and
credits. So, one needs to know more than the closing balance. For the diabetic, that
means being able to record and interpret the process of the condition.

The worksheets shown in Figure 4 are from a diabetes education class targeted
to newly diagnosed individuals. The intent is to enable the tracking and recording

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=`^%+ Diabetes class worksheet

of blood glucose levels and to look for patterns and trends. Example 1 shows an
individual testing his/her blood four times a day, at breakfast, lunch and dinner and
before bedtime, over a period of four days. Individuals are asked to keep their blood
glucose levels within a target range of 4 to 7 before meals and 5 to 8 after meals
(CDA, 2008c). If the number recorded for blood glucose levels is too high or too low,
complications could appear, so it is important to look for any patterns that arise in order
to take appropriate steps to bring the levels back within target range, such as changing
one’s diet or exercise regimen.

14

However, based on my personal observations as a class participant, the format of
the worksheet seems to allow for possible confusion. Many people in the class found
the worksheet, and the significance of the numerical illustrations, unclear. There is
no statement in the sheet itself that indicates whether the blood reading should be
done before or after each meal. And though some of the readings illustrated here or in
Examples 2–4 are far out of the target range, there is no evident way to flag readings
(single readings or patterns) that may be a cause for worry versus readings that may
be truly dangerous. There also appears to be no way to connect the readings outside
the target range with causal information.

The research conducted for this project indicates the need for new ways of dealing
with numeracy issues when journaling diabetic information. Perhaps changing numbers
into something more visual, such as symbols, could aid numeracy literacy. Universal
visual languages using visual aids in the form of pictographs date back to early days
in the medical field, such as the use of symbol systems to represent administering
medications (Dowse & Ehlers, 2001).

2.5

HEALTH LITERACY

Another broader issue to be considered in connection with self-management
and education for those living with diabetes is health literacy. Health literacy is
defined by Parker and Ratzan as the degree to which individuals have the capacity
to “obtain, process and understand” basic health information and services needed
to make appropriate health decisions (as cited in American College, 2007). Limited
understanding of health information leads to poor health outcomes. Low health literacy
threatens people in North America despite age, race, education level or income level,
although to varying degrees. The 2003 National Assessment of Adult Literacy (NAAL)
survey discovered that 2 out of 5 adult Americans have problems acquiring and
understanding basic health information needed to make correct health choices. NAAL
has also confirmed that low health literacy affects more adult Americans than obesity,
diabetes, HIV/AIDS and breast cancer combined.

Other reports mentioned by NAAL indicate that though individuals acquire health
information, they do not always comply by making better health decisions. Individuals
15

are deemed non-compliant when they do not adhere to treatment programs, perhaps
because they have not processed what they’ve been told. In the United States, the
2003 NAAL survey estimated that among 242 million adults, 36% had basic or below
basic health literacy levels (suggesting approximately 87 million people). In Canada,
with 31 million people, the International Adult Literacy and Skills Survey 2003 (IALSS)
found that 18.6 million people have low health literacy. Studies have shown that there
is relatively greater prevalence of low health literacy among minorities, people of low
income and people of low education (Houts, Witmer, Egeth, Loscalzo, & Zabora, 2001).
Since diabetes affects all races, all incomes and people of all education levels, health
literacy issues should be taken into account when thinking about new methods for
diabetic care.

As it relates to diabetes, health literacy is defined as “the ability to read, understand,
and act on health information” (Pfizer, 2006). Health literacy is important because the
more education and understanding a diabetic has about his/her health, the greater
that individual’s ability to make and continue to make thoughtful health decisions in
maintaining glycemic control of his/her condition.

As our society advances economically and medically and comes to rely more and
more on technology, health care systems for people living with diabetes become more
complex. There are more studies showing the increase of health literacy issues: with a
population that is continuing to age, the complexities of the health care system and the
prevalence of increasing chronic conditions, health literacy problems are worsening
(Pawlak, 2005). Since studies show that health literacy issues increase as people enter
the health care system, one would expect that this would also affect many people living
with diabetes because of their increased involvement in the health care system due to
treatment for long-term complications.

According to NAAL the average North American has a ninth grade reading level,
but a survey of approximately 800 studies published between 1970 and 2006 reveals
that the reading level of most written health-related materials is higher than the reading
level of an average high-school graduate (Canadian Council, 2007). For people living
with diabetes, as medical advances continue, the language of the medical system
becomes more complex. The gap only increases as health insurance, medical forms
16

and technology become more advanced. Pamphlets given to individuals with diabetes
are often difficult to understand. In addition, there may be a need to learn new computer
programs for compiling data for self-management (Figs. 2, 3, 5 and 6 all reflect such
programs). Not only individuals but also medical professionals have to keep learning
new technology in order to comply with treatment programs. Health literacy issues will
only continue to grow as people living with diabetes are asked to learn more material
and medical jargon which requires more responsibility for self-care.

Educational materials and take-away pamphlets in the average doctor’s office are
written for an audience with a twelfth grade reading level. For some, these materials
can seem confusing and will most likely be discarded. Most forms that individuals must
complete to continue care are confusing. An example is the use of medical forms that
are compiled in a way that makes it difficult for people to become informed of treatment
options and to know who they are giving their consent to and what they are giving their
consent for (Houts et al., 2001). Though initial diagnosis of diabetes may not require
the use of learning technology, becoming informed of treatment options and of the
long-term complications may necessitate some form of portable device with an easyto-learn and easy-to-use interface that supports the recording and tracking of blood
glucose levels, diet, exercise and medicating regimen.

Health information today involves mainly verbal and written information. But
there are studies and projects shedding light on the effects of a non-verbal/non-textual
language. These include the use of pictures, icons, pictographs and the use of new
visualizations of computer interfaces created to improve health literacy education and
self-management. Most health care professionals assume that they are dealing with
a reading population. The current health care system demands that people have a
wide range of literacy skills in order to operate within the health care environment
(Dowse & Ehlers, 2001). Studies, however, show that much health information is
confusing and difficult to understand due to an inability to read (Dowse & Ehlers, 2001).
As discussed above, most health information is written in sophisticated and complex
medical jargon, which targets people of a higher level of literacy. But at the same time,
and discouragingly, other literature suggests that oral medical information is not well
recalled by the individual (Houts et al., 2001).

17

Current projects are working to create new methods in presenting this complex
information in visual ways (Houts et al., 2001). Pictographs as visual aides can
stimulate imagination, interest and a sense of meaningfulness in people and present an
alternative method to the written word (Houts et al., 2001). In a recent study involving
21 junior college students, half of the respondents were presented with information
that combined verbal and pictograph information, while the other half were only given
verbal information so that half of the respondents had to rely entirely on what they
heard while the other half relied on both verbal and visual information. Concluding the
study, 85% of the respondents were able to recall the information when pictographs
were used, but only 14% were able to recall the information without pictographs (Houts
et al., 2001).

2.6

PICTOGRAPHS

Since health literacy is an issue that must be addressed when designing new
self-management methods for people living with diabetes, it is important to consider
the numerous studies done in the medical field using visual language to improve
health literacy. Research shows that there is an overall increase in health literacy
with the use of a visual language (Davies, Haines, Norris, & Wilson, 1997). One study
commissioned by the UK Department of Trade and Industry showed how the use of
safety pictographs affected learning and compliance among people (Davies et al.,
1997). The results revealed that respondents were able to recognize and recall the
use of pictures better than that of a written text. Through their research, the authors
conclude that pictographs can usually be “interpreted accurately and more quickly than
words,” (Davies et al., 1997). Within the study, there were a series of investigations
done into safety labeling on consumer products that suggested that familiarity with
symbols improved people’s comprehension. Symbols have more impact when they
are designed in such a way that they have enough space for viewing and noticeability
(Davies et al., 1997). Adding color, size and positioning together with the use of text
makes the overall impact significantly greater.

However, studies show that testing pictographs without the use of text failed to
educate people as to safety warnings (though there are more studies being done as

18

to how understanding affects actual compliance among people, since understanding
something and complying with it in practice are separate matters.) The use of safety
pictographs that are both too complex and too abstract has also proved unsuccessful
because people are required to learn them, thus affecting their ability to remember and
therefore comply (Davies et al., 1997).


 +2.#  &(#-.  /'#*/ "0!/'+* *" +0*.#('*%

5
  4

Another study, more directly related to the presentation of health information,
examined the use of pharmaceutical pictographs in a low-literate population of South
Africans (Fig. 5) (Dowse & Ehlers, 2001). The study investigated the factors of noncompliance with treatment programs in different individual populations and how local
residents responded and had preference for locally designed pictographs versus


 +2.#  &(#-.  /'#*/ "0!/'+* *" +0*.#('*%

5
  4

=`^%, Pictograph studies

pictographs designed without taking into consideration the locals’ understanding.

Communicating pictographs that are successful largely depends on an intense
study of design and testing to create “clear, acceptable, and appropriate” pictographs
(Dowse & Ehlers, 2001). The design process can be quite complex. It entails deep
insight into the target audience and also requires the involvement of the target
population throughout the design process.

Visual images in most cases become successful because of the constant
exposure one has to pictographs to stimulate the learning process. Interpretation
demands knowledge of the representation of a three-dimensional world becoming a
two-dimensional printed visual aid (Dowse & Ehlers, 2001). The authors concluded
that the key to producing successful pictographs for practical implementation was
19

requiring constant improvements and feedback for future designs. The study also
indicated that people who are exposed to too many images are less able to recall
the information because so many new images require more learning in order to
understand and comply. But studies also show that people have a large capacity for
visual information and are able to absorb and continue to retain images over time
(Dowse & Ehlers, 2001). This makes it important to continue with follow-up testing
to see how respondents have learned to understand and recall pictures over time.
Furthermore, with the use of pictographs present over time, people with low literacy
can recall large amounts of medical information, though the fact that they are able to
recall this information does not mean that they will comply with it (Houts et al., 2001).
But studies show that pictographs designed to act as decision aids help to facilitate
decision making; these may offer quantitative information about risks and benefits of
various treatment decisions (Price, Cameron, & Butow, 2007).

There are also investigations into visual mapping to communicate medical
information and medical instructions. One study has found that using pictographs in a
sequence can help to administer medical instructions to people who are more visually
literate than prose literate (Hill & Roslan, 2004). The study, by William et al., looked
at how to convey basic medical instructions such as “how to take a medication on an
empty stomach,” “how many pills of a prescription should be taken” and “how many
times a prescription can be refilled” (as cited in Hill & Roslan, 2004, p. 1). Figure 6 on
the next page offers a related example. This figure shows a sequence of pictographs
used in association with text to convey taking medications with or without food over
the course of the day. As pictured here, you see the low sun symbol with the word
“morning” above the knife and fork symbol meaning food with the word breakfast and
a picture of the prescribed medication with words of correct dosage. The sequence
of symbols continues, with a high sun for noon lunch, a low sun for evening dinner
and a sliver of moon for night. These sequence maps are useful to help improve the
individual memory while offering directions when the medical practitioner is not present
(Hill & Roslan, 2004). The study also noted that with modern computer technology and
graphics, these maps can now be designed for specific individuals’ protocols, including
updating when needed (Hill & Roslan, 2004).

The overlapping themes in the studies referenced for this project support the need
20

Figure One: Concept Map Illustrating How to Take Glucophage (Antihyperglycemic drug for treatment of diabetes

=`^%- Pictograph sequence mapping

for a new approach to diabetic self-management that goes beyond what is currently
available. There is a real design opportunity for a software application that is crossplatform and that runs on a compact PDA or mobile—one that uses an iconic language
for navigating or mapping through the graphic user interface.

Like Hill’s diagram (Fig. 6) of mapping out of medical instructions using icons, my
conceptual application prototype draws inspiration from this format. Using a combination
of icons and text to represent diabetic information would allow individuals to access and
navigate the interface with greater ease. As supported by research, individuals using
this type of system would likely enable information recall more readily than text only or
numbers only. This application could also provide an alternative system for diabetics
who have difficulty using other journaling systems, enhancing motivation.

2.7

SELF-MANAGEMENT AND MAPPING

Currently available for diabetic self-management are software applications that
output the data to graphs and charts. However, most of this software (through my
research) lacks good design. As Edward Tufte (a designer and expert on information
21

design methods) mentions, “Good design is clear thinking in action and clear thinking
made visible,” whereas “bad design is stupidity in action or chart junk” (Tufte, 2001).
As shown in Figures 5 and 6 (preceding page), the information is still not organized in
a way that allows the user to interpret the information with ease, thereby enabling him/
her to identify patterns and trends relative to needed lifestyle changes. For instance,
Figure 6 appears to look like an annual report. Unless the individual is an investor or
someone with prior knowledge of this type of data visualization, it may discourage the
user from journaling.

What if it was possible to rethink how these charts could be represented? Figures
7 and 8 exhibit the relative information that diabetics need to monitor, but some of
this software may not meet the test of good design as defined by Tufte. There are

Due to the inability to acquire copyright
permission the image shown here has been
removed
The image consisted of mobile phone journaling
software. This specific image represented
recorded data into graphs. For some these
graphs could seem hard to interpret due to
how the information is being represented
on screen. This graphs makes use of many
colours to show specific information, though
the information seem unclear.
=`^%. DIABASS desktop software
Due to the inability to acquire copyright
permission the image shown here has been
removed
The image consisted of a journaling software
application for diabetics to record health
related information. This application for some
could be seen as a calendar interface, tracking
information. This specific imaged showed how
the input information was then represented to
the user to make use of it. Though, for some
this representation could seem confusing.
=`^%/ Diabetes Logbook X
22

many contemporary designers who focus on information mapping, such as Edward
Tufte, Nathan Shedroff, Richard Saul Wurman, John Maeda and Jesse James Garrett.
In addition, there are projects and products that make use of alternative mapping
techniques to present information in simple, interactive, fun and digestible ways that
people can interpret with ease. Examples include iPhone, Microsoft Surface and
wefeelfine.org. Robert Horn creates “mess maps,” which are “a kind of knowledge
map that portray the major organizations and societal sectors involved in a mess. It
generally summarizes a particular group’s understanding of the problems, causes,
influences, and relevant data about the mess” (Horn, 2008).

As can be seen in Figure 9, Horn has created a mess map for the Public Mental
Health Department of Multnomah County in Oregon. This map visualizes and organizes

KEY

Mental Health Services Dynamics and Dilemmas
This map was developed by the Multnomah County Task Force on Mental Health. It
portrays the way public mental health services are delivered and the major factors that
contribute to the problems faced by the different agencies and their customers.
5. OHP plan is to control costs,
provide incentives to manage care by
distributing funds on a population (not
a per client/patient) basis

Mental health advocates and
providers, thinking more
money would be available for
expanded services, pressed
hard for inclusion in OHP.

New
eligibles
create
competition
for resources

State Mental Health
Agency (MHDDSD)
Attempted to integrate mental
health into full coverage healthcare
plans. Required competition for
Medicaid contracts.
Stopped requiring
existing data
system before
new system
operational.

Some other providers (e.g. residential facilities) also receive direct
Medicaid payments from the state.

Did not initially
allocate the funds for
setting up the data
system (low priority).

County Data System
Sector
Department of Community and
Family Services, Behavioral
Health Division (BHD)

BHD can't control mental health system
because state directly funds some
services and because of fragmentation
of alcohol and drug system.
This diverts county resources that could
go to shore up deteriorating outpatient
and case-management services.

CAAPCare

TRIAGE CENTER OFTEN FULL
County contracts for 3 secure
beds in Crisis Triage Center
(Providence Hospital) to relieve
pressure on acute care. But
these beds are often full, so
police have to find other
hospitals. There are complaints
about customer treatment.

Need to upgrade
data system for
publicly managed
health care

DATA NOT AVAILABLE
Required data not reported
to state on a timely basis.
Poor accountability.

Staffing deficiencies
prevent mental health
data system from being
fixed (at present)
Dilemma of fragmented

Most programmers are
busy fixing the Y2K
problem

County
Health
Dept.

1997
1998
Not known until September 1999

ACTUARIAL RATES NOT ADJUSTED
Used questionable assumptions in setting
managed care rates for mental health benefits.
Did not provide "risk adjustments" as was
done for physical healthcare for increased
severity of illness among urban poor.

Greater mental
deterioration

Customers don’t have
needed supportive services

Lack of affordable
housing

POSH
Portland
Oregon State
Hospital is full

Low number of
group homes

Dramatically reduced
state hospital population
increases demand for
group homes

Neighborhood
concerns to group
homes for mentally ill

Increase in severity of problems

The Case Worker Sector

Can’t provide
needed
supportive
services

Mostly work for non-profit agencies

Approx. 26%
cut in payments
during 1997-98.

To be efficient
must cut staff

Rapid growth
of high tech
“Silicon Forest”
around Portland

Mentally ill people
go to primary care
clinics for help and
medication. 16%
increase in two years.
Pressure on traditional
services for women
and children for acute
primary care and
disease control.

and antiquated state data
Public
system
contracting is
too slow and
complex
Increased salaries
Uncompleted
because of scarcity
contract for
(nationally and
encounter
locally) of
data system
programmers

County Jail
(Corrections
Health)
Increased mentally ill inmates
from 1500 to 3000 in 2 years.
Inmates lose Oregon Health
Plan coverage.
Mentally ill inmates often
released to street. Difficult to
get casework, treatment, and
medications from mental
health providers.

Turnover in
data
management
positions

County Aging and
Disabilities Services
Department
Increased demands on aging and
disabilities services.
Clients discharged from intensive
services with no outpatient follow-up.
Poor communication among all
sectors, especially with the
Crisis Triage Center.
Housing, case management, and
social support services inadequate.
24-hour hotline for disabled
clients overwhelmed by mental
health crisis calls.

Decreased number
of visits and
decreased time for
each customer visit.

Case workers
have to fill out
more paperwork
in less time

Case workers can’t keep
up with service demand

Case workers are
paid less than
teachers - $25,000
per year

Case load increase
from 35 to 100 per
case worker
Experienced case workers
leave in droves (From 15%
to 40% in one year)

R. E. Horn
Visiting Scholar
Stanford University
2819 Jackson St. #101
San Francisco CA 94115
(415) 775-7377
hornbob@earthlink.net
URL: www.stanford.edu/~rhorn

Family, Child & Adolescent
Customer Sector

Customers complain
and seek other
sources of help

Law Enforcement Sector

STREET NEEDS UNMET
Increased homeless street
population in which service
needs for many are unmet.
2,700 individuals seek shelter
every night in Portland. At
leasst 30% of homeless
people are mentally ill.

MAJOR SERVICE DECREASE
Major decrease in access to
mental health services.

Schools lack
access to
community
treatment
resources

Adult Customer Sector

Deliver customers
(often repeat customers)
to treatment location

Layoffs and
reductions in
services

Poor continuity
of care

Many new inexperienced
case workers

Officers are often the first treatment
providers, sorting out appropriate
response to domestic violence, alcohol
and drug abuse, as well as mental
illness, and sometimes spending
several hours with customers, calming
people down and trying to find a place
for them.

Some agencies are not
adequately handling
transition to managed care.

Increased errors

Data recording must be
increased significantly
Must amalgamate
clinics into fewer sites

IMPACT OTHER DEPARTMENTS
Increased overhead costs lead to
less money for actual delivery of
services. These combined
factors decrease ability to meet
the increasing demand for
services and broadly impact
other County Departments.

Increased administrative costs

HOUSING CAN'T BE USED
Subsidized housing is
available but unused due to
lack of mental health
support services.

People can't be
released from
State Hospital

Requires “encounter”
data system by payers.

Overhead

Scarcity of
software
programmers

25

Lack of bilingual staff
MINORITIES NOT SERVED
Accessible services for
minorities do not yet exist
and data not collected.
Affects all sectors.

Ceres
Est. 1998 data

Multnomah County Sector

There are more clients who appear to have
more serious problems than expected when
the rates were set (based on anecdotal
information).

$85
million

50

Non-Profit Community-Based Provider Agencies
Public Agency Provides
75% of Managed Mental Health Care

Direct Services

Up to $15.3 million decrease (in transition
to Oregon Health Plan).

$100
million

75

(Risk adjustments are differential rates of
payment for seriousness of diagnoses.)

Overhead

After

100

Poor and incomplete data

Accountability diffused

Rentals to mentally
ill require case
management

State Medicaid
Agency (OMAP)

State Mental Health and Developmental
Disability Services Division

State Mental Health Agency creates and contracts directly
with these payers:
Private Managed Care
Regence and Family Care contract with state, and Ceres
Behavioral Healthcare System (affiliate of Magellan Behavioral
Health) operates the "carve-out" for them.

Direct Services

Customer complaints accelerate

Housing Sector

Increased Administrative Overhead Cost

Before

Fragmented system administration

Request 1 : Waivers to implement OHP Priority Plan benefits.
Request 2: Waivers to implement managed care

Public Managed Care
CAAPCare (County Behavioral Health Division, Department of
Community and Family Services)

(Difficult to allocate to cost centers.)

125

Oregon State Executive Sector

CHILDREN LEFT OUT
6. Intensive treatment services for
children (residential) left out of
managed care by Legislature,
interrupting continuity of care.

Capitation refers to payments based on the number of people who fall into the
Federal categories of poverty and those who are newly eligible.
Carving out refers to the separation of mental health from physical health payers.

County (CAAPCare)
12% (up fr
om 3%)
Insurance Carrier (Regence)
5% (new cost)
Ceres Behaviorial Healthcare
12% (new cost)
Networks of provider agencies 3 - 8% (some new cost)
Non-Profit community agencies est. 10-18% (increased cost)

Up to $15.3 million
less Medicaid funds
available for mental
health

Less money to serve them

Federal Sector

The Medicaid Payment Sector

The state created mental health "carve-outs" (1997). Carve-outs are
new entities, Mental Health Organizations (MHOs), that receive and
distribute capitation payments to providers and report data to the state.

More seriously ill clients

Because Medicaid is
Medicaid is an entitlement
an insurance program
program so HCFA doesn't allow state to
HCFA needs billing
implement priority plan by rejecting
data for cost control
requests to reduce the number of services
to be covered.
Civil rights act
Requires a new, uniform
requires access
“encounter” data system for
for minorities
all Medicaid services.
The HCFA was indecisive (1995(An encounter is a one-time
1998) on allowing managed care
visit of a customer to a
mental health agency.)
of Medicaid for Oregon.

COST CONTAINMENT FALTERS
Medical and surgical costs can’t
be contained as the Oregon
Health Plan was intended to do.

Dammasch State
Hospital closed
(1995)

Medicaid pays for about 78% of the $100 million (1998) total mental
health services in the County including OMAP fee-for-service.
However Medicaid managed care is only about 29% of total mental
health costs. Remaining 71% is for extended care and fee-for-service.

This "Fragmented Administration" icon is used by the Task Force as a
reminder of areas of mental health administration that could benefit from
greater administrative integration.

Health Care Financing Administration (HCFA)

Increased assets limits, residency requirements,
and premium co-payments to reduce costs by
making fewer poor people eligible.

4. State requires counties to
care for those at serious risk
of harm to self or others.
Counties also must pay for
acute hospital care

More diverse customers than the rest of the state

HCFA

It becomes more difficult to pay the 40 percent
federal matching requirement for expanded
coverage from limited state resources

3. Integrated mental health diagnoses and treatment
into the priority list of Oregon Health Plan benefits.
24% increase in clients eligible for more benefits.

More clients eligible for more treatments

The different colors for the arrows (
) aid tracing of
long causal connections. They do not have any other significance.

Huge reduction in services

FRAGMENTED DRUG AND ALCOHOL PROGRAM.
2. Separated alcohol and drug abuse funding from
mental health and redirected to medical/surgical
payers and providers. People suffering from
mental illness and alcohol and drug abuse cannot
be treated within any one system of care.

Mental Health
Goal: To cover
treatment of a
full range of
mental
disorders not
previously
provided by
integrating them
in the health
care priority list.

Please send comments
and suggestions to:
hornbob@earthlink.net.

Low number of group homes

Neighborhood concerns to group homes for mentally ill "causes" low number of group homes.

Issue Map® by MacroVU®, Inc. R. E. Horn, Information Designer.
Yolanda Montijo, Graphic Production. December 16, 1999.

Oregon State Legislature

Draft v.12

Neighborhood concerns to group homes for mentally ill

$ millions

1. Passed Oregon Health Plan (OHP) to increase health
care access by prioritization of treatments by costeffectiveness. Legislature biannually approves the cutoff line below which treatments are not covered.

Commissioners' Dilemma

Read the arrows on this page as "causes" or "links".
Example

Major life
crisis

Caretaker
families not
supported

Lack of
25-35%
employment
increase in
training and
number of
placement support
mental health
customers Customer
co-payments
required

Impact of cultural diversity on
service delivery not understood

FAMILIES DON'T
GET SERVICES
Emotionally
disabled children
and families lack
support services
or treatment they
need.

End of 5-year partnership program
funding in 1998 from Robert Wood
Johnson Foundation
No continuity of
children's services
Return to
fragmented
Increased
program delivery
juvenile crime
Increased longterm residential
care
Juvenile court
often must place
Increased foster
emotionally
care
disturbed children
in detention

The Street Sector
(The vast uncounted)
Fewer drop-in
Centers

Victims of
street predators

Increased enforcement of petty
crime arrests to protect customers
and public (anecdotal evidence)

Alcohol and neighborhood drug
dealer provides pharmaceutical
relief. Approx. 80% of homeless
have alcohol/drug problems.

=`^%0 Mental Health Services diagram
the department in ways that show and force visual comparisons. As designed, the user/
viewer is able to draw links or look for connections throughout the department. Keep in
mind, however, that this maps a basically static “mess,” while diabetes care will involve
23

many fewer elements, but those elements will be constantly changing and interacting
over time, in a dynamic fashion.

Visual maps can also be fun and interactive. As can be seen in Figures 10 and
11 (next page)—offered here as illustrations from non-diabetes applications—these

=`^%(' E-Commerce map

maps can take complex information and present the data in a way that is inviting and
interactive to the viewer, offering the combination of text, images and pictographs in
multiple ways for interpretation. As Ronnie Lipton mentions, “A well designed diagram
communicates more clearly and memorably than text alone. It communicates on a
different level than words do because it shows, it doesn’t just tell” (Lipton, 2007). This
type of data representation is important for diabetics since most of the information they
record is numeric. With the use of visuals and text as in Figures 8 and 9, one can see
that all the words are spelled out, discreet messages help explain the information, the
graphics attract the viewer and the colors are used to help illustrate the content. This
same method could prove useful for diabetic representations.

24

=`^%(( Information Anxiety

25

3.0

INFORMATION AND INTERACTION DESIGN

Information design “analyzes, defines and structures the relationships between
ideas and the way the ideas are visualized” (Hanson, 1999). Information design
serves as a tool to collect data that then is organized and given structure to create
meaning for an individual. With the use of information design, individuals can more
readily access information they can remember, interpret and retain. This process is
essentially a learning tool (Screven, 1999). Large amounts of information are simplified
and can then be accessed by individuals. One’s attention can only remain focused for
a short amount of time (Screven, 1999); since information that is in the form of complex
messages takes individuals longer to interpret, the symbolic “shorthand” for the road
maps could enhance learning efficiency. However, too much information in any form
can lead to information overload or information anxiety. This is a crucial issue that must
be addressed in the design process of my proposed application.

Also to be considered is the notion of “mindful versus mindless” attention (Screven,
1999). By selecting some sections of information over others, the individual’s mindful
attention focuses on some elements and chooses not to pay attention to others. An
individual’s attention level may range from “highly focused and active to casual and
unsystematic” (Screven, 1999). The concept of mindfulness is that greater participation
levels may enable the transfer of knowledge to long-term memory. As illustrated in the
“Understanding Spectrum” (Fig. 12, next page), we move from a place of perceiving
to a place of learning that leads us to wisdom. In the diagram, note that the user
surrounds information, knowledge and wisdom, not data. Richard Saul Wurman
sees data as valueless to most people (as cited in Screven, 1999, p. 270). The data
should be transformed, organized into a structure and illustrated so that it can take on
value and be communicated with ease. Once the information is then transformed into
knowledge, as in Screven’s diagram, it further transforms into learning or wisdom. My
conceptual framework proposes to catalog the diabetic’s recorded data and transform
it into information that is illustrated as maps and patterns that are organized, thereby
offering representations that over time and usage would act as a visual road map for
improved self-efficacy in health compliance.

Another example—perhaps even more relevant for the present purpose, since
26

=`^%() Transforming data into wisdom

it carries through to action—showing the transformation of data to wisdom and into
action is illustrated with Cooley’s diagram (Fig. 13, next page). In the figure, the dot
representing data is the starting point of the curved line. As the data transforms, it
lessens in mass, forming into information, which funnels into knowledge. Once the data
is transformed into knowledge, it becomes meaningful to the individual. This signals
the individual can interpret the data and achieve learning that leads to wisdom. Once
wisdom has been attained, the individual can take action.

The “tacit area” of Cooley’s diagram is where the interaction between the data
being perceived and the individual takes place. The transformation from data to
wisdom and on to action can be achieved by creating experiences through interaction
design (Shedroff, 1999). Interaction design studies two systems and creates a method
or experience for the two systems to work with each other. For example, my proposed
application would provide two levels of interaction: the first level would be the user
while the second would be the human system itself (Shedroff, 1999). Interaction design
creates communication by combining language, images and sound (Macy, Andersen,
& Krygier, 1999). One could think of interaction design as the communication between
27

=`^%(* Transforming data into action

a person and a handheld device. It’s this back and forth communication between the
person to the device that is called interaction. For example, when the device gives the
user a visual message, the user can then respond to it, which then can prompt another
message (Fig. 14, next page); it is a continuous cycle.

This cycle creates experiences for the participants in the form of stories or
narratives that can be very meaningful. As Donald Norman puts it, “The behavior of
an information processing system is not a product of the design specifications: it is
a product of the interaction between the human and the system” (2004). Though the
application is a complex processing system, the real design is the interaction that is
created between the device and the individual. My intended application strives to create
an experience for the user, from input of data to output interpretation, in the owning and
28

=`^%(+ Interaction Design Cycle

sharing of the visual maps produced.

The interface design will utilize different sensory methods to communicate the
experience between the device and the user. Some of these features include sounds
for alarms (as reminders), the use of touch technology to navigate the graphical
user interface and lighted images to indicate the forward and backward steps. As
Moggeridge’s collection of case studies in “Designing Interactions” (2007) illustrates,
interaction design is the most critical element in creating successful interactive
products.

A simple design combining text and visual language such as pictographs and
a number of descriptive navigational levels (like levels in a game’s graphic interface)
29

aids attentiveness to the screen culture. Too many clicks into the cyberspace may
de-motivate a user to continue (as is the case with journaling by hand or digitally).
As professor Mollerup of the Oslo National Academy of the Arts states, “Simplicity is
a success criterion of most—if not all—serious design” (Mollerup, 2007). Driving this
project has been the ever-present idea of simplicity in an interface that can be easy to
learn, user friendly, accessible and smart.

3.1

APPLICATION DESIGN EXPLORATIONS

I first began my visualization design by mapping out the special features and
functions illustrated in Figure 15. The four major functions for which data must be
recorded are blood glucose levels, diet, exercise and medications. Keeping in mind

=`^%(, Graphic user interface atlas
that literacy is an issue, the use of an icon language seems to be a good solution as a
way to navigate through the levels in order to record specific data. Simply stated, my
project aims to design an interface and navigation that flows intuitively with the user’s
needs. The iconographic language for this application is still undergoing design and
testing, so some icons are more finished, while others are still sketches as research
drives my design process.

Working with a small sample population proved very useful as participants
provided input into the navigation design and sequence. In order to do this, prototypes,
in the form of paper renditions, were printed and shown in a sequence to illustrate the
navigation process. I thought it best to create software that could easily be designed for
cell phones or PDAs that use touch technology. Since most individuals already carry a
30

cell phone, with more and more of them moving to touch technology, this offers mobility
to individuals to self-manage their condition. The use of touch technology offers a more
tangible navigation of the interface. The user touches/selects an icon and other “road
map” graphics to navigate the screen space. The user could also either use a pop-up
touch screen keypad or the phone’s number pad to enter data. The interface guides the
user through the appropriate steps to record specific criteria. As the user navigates, the
interface prompts the user with choices; once a choice is made, the device responds
and guides the user to further selections.

The software/device also signals an alert when the user makes a wrong decision,
thereby permitting corrections. However, the interface allows the user to be guided,
rather than prompted into making decisions they don’t want to make by making

[\m`Z\Xccfnjk_\lj\ikfY\^l`[\[#iXk_\ik_XeZfXZ_\[`ekfdXb`e^[\Z`j`fejk_\p[feËk
selections that become hard to get back to the home screen or move backwards in
nXekkfdXb\%K_\gfk\ek`Xc]fik_`jXggc`ZXk`feXe[`dgfikXekgfk\ek`Xc`j`kjXY`c`kpkfY\
navigation. An important aspect of this application is its ability to be customized. Users
Zljkfd`q\[%Lj\ijZflc[X[[e\nZi`k\i`Xk_Xkk_\pdXpnXekkfi\Zfi[%8efk_\igifgfj\[
can add new criteria that they may want to record. Another proposed feature is an
artificial intelligence sensor to remind the user of his/her last location of prior usage.
]\Xkli\`jXeXik`ÔZ`Xc`ek\cc`^\eZ\j\ejfikfi\d`e[k_\lj\if]k_\`icXjkcfZXk`fef]gi`fi
The application would open with a home page to orient the user to the iconography and
ljX^\%K_\Xggc`ZXk`fenflc[fg\en`k_X_fd\gX^\kffi`\ekk_\lj\ikfk_\`Zfef^iXg_p
road map metaphor. Back and home buttons would be on the top screen later as well
Xe[ifX[dXgd\kXg_fi%9XZbXe[_fd\Ylkkfejnflc[Y\fek_\kfgjZi\\ecXk\iXjn\cc
so that the user does not become lost in the levels of information architecture.
jfk_Xkk_\lj\i[f\jefkY\Zfd\cfjk`ek_\c\m\cjf]`e]fidXk`feXiZ_`k\Zkli\%



@Y\^Xen`k_jfd\\Xicpjb\kZ_\jXe[k_\edfm\[kf[`^`kXci\e[`k`fej%J\\=`^li\(-%
I began with some early sketches and then moved to digital renditions (Fig. 16).

8e\Xicp`[\X]fik_`jXggc`ZXk`fen\i\YXj\[fecfX[`e^fekfk_\`G_fe\gcXk]fid#Xe[lj`e^
An early idea for this application was based on loading onto the iPhone platform and
using the same touch icon system. Though the icons in the figure are not designed,

Diet

Back

Carbohydrates

Add

Back

Carbohydrates
Enter Amount and When
Breakfast

BG

Insulin

Diet

Exercise

Sugar

grams

At:

Lunch

Dinner
Meds

Feelings

Reminder

Misc

Settings

Output

Check-Up

Cholesterol
Snack

Alcohol
Diabetes

Ok

=`^%(- Early interface exploration
=`^(-%<Xicp`ek\i]XZ\\ogcfiXk`fe%

31
k_\jXd\kflZ_`Zfejpjk\d%K_fl^_k_\`Zfej`ek_\Ô^li\Xi\efk[\j`^e\[#k_`j`ccljkiXk\j

k_\eXm`^Xk`fef]k_\lj\i`ek\i]XZ\%@k_\e[\Z`[\[kf[f]lik_\ii\j\XiZ_`ekfdfY`c\[\m`Z\
gcXk]fidjXe[[`jZfm\i\[k_Xkk_\`G_fe\`jjf_\Xm`cpZfgpi`^_k\[k_Xkk_\k_fl^_kf]k_`j

this illustrates the navigation of the user interface. I then decided to do further research
into mobile device platforms and discovered that the iPhone is so heavily copyrighted
that the thought of this project moving into a prototype stage on the iPhone could be
years away. Further research led me to Google’s new software platform called Android,
which is open source. 5 Google is the first to start an open-source platform for PDAs.
As long as this application lived on Android, it would allow my application to live on
multiple PDAs or phones that were Android friendly.

In leaving the iPhone behind, I found another phone with touch technology called
the HTC touch. HTC has agreed to be part of Google’s Android platform, though at
the moment HTC currently uses Microsoft Mobile 6 software. Exploring other interface
navigation, Figure 17 illustrates this. The home page allows the user to move the
features in a clockwise or counter clockwise rotation. However, in testing this concept

07 BG

07 BG

Diabetes Journal

07 BG

07 BG

Food & Diet

Booze

Alcohol
Food & Diet

Time

Wine

2

Drinks consumed

2

Glasses of Wine

=`^%(. Further interface exploration
=`^(.%=lik_\i`[\Xjf]`ek\i]XZ\\ogcfiXk`fe%

for feedback, participants expressed that the type and icons were too small and that it

eXm`^Xk`fe#=`^li\(.`ccljkiXk\jk_`j%K_\_fd\gX^\Xccfn\[k_\lj\ikfdfm\k_\]\Xkli\j
seemed too difficult to navigate. It was not clear where to start to navigate the space or

`eXZcfZbn`j\fiZflek\iZcfZbn`j\ifkXk`fe%?fn\m\i#`ek\jk`e^k_`jZfeZ\gk]fi]\\[YXZb
how the user would move to the next level. At this point, my application design process

gXik`Z`gXekj \ogi\jj\[ k_Xk k_\ kpg\ Xe[ `Zfej n\i\ kff jdXcc# Xe[ k_Xk `k j\\d\[ kff
began to move from the stage of explorations to that of possible solution.

[`]ÔZlckkfeXm`^Xk\%@knXjefkZc\Xin_\i\kfjkXikkfeXm`^Xk\k_\jgXZ\fi_fnk_\lj\i
nflc[dfm\kfk_\e\okc\m\c%
5

Open source is a set of principles and practices on how to write software, the most
important
of which
that the source
code
is openly
available.
The
Open

8k k_`j gf`ek#
dpisXggc`ZXk`fe
[\j`^e
gifZ\jj
Y\^Xe
kf dfm\
]ifd
k_\Source
jkX^\ f]
Definition, which was created by Bruce Perens and Eric Raymond and is currently
\ogcfiXk`fejkfk_Xkf]gfjj`Yc\jfclk`fe%
maintained by the Open Source Initiative, adds additional meaning to the term: one
should not only get the source code but also have the right to use it. If the latter is
denied, the license is categorized as a shared source license (Open source, 2008).
32

3.2

APPLICATION DESIGN SOLUTION (ONGOING)

Explorations and working with the small sample population have led me
to understand the need for an interface design that is easy to follow, clear in its
communication intent and with a visual language that is easily learned and interpreted.
Note that this is not a finished design solution. I am still performing further testing and
design explorations with my sample population before finalizing the icon designs and
the interface navigation. The current concept prototype does not take into consideration
the issues involved with those who have gastric diabetes.

The first action for the user would be the recording of his/her blood glucose level.
As can be seen in Figure 18, this illustrates the sequencing of the interface navigation.
To record the blood glucose reading, the user would first use a blood glucose meter

?fd\

Diabetes Home
Blood Glucose

Diet

@eglk K`d\

Blood Glucose

Enter

Blood Glucose

7

Morning
Before Meal
After Meal

Exercise

@eglk 9>

1

2

3

4

5

6

No Meal

7

8

9

Enter

C

0

=`^%(/ Navigating the interface: blood glucose
to check his/her blood glucose level. Next, the user would navigate the application
home screen and select the blood glucose icon which is represented as a small and
simplified version of a conventional shape for a blood glucose meter. Once selected,
the user would be taken to another screen with a list of options. The first option is at
what time of day the reading was taken; the user would enter morning, noon, evening
or nighttime. If the user is taking a reading with a meal, he/she can specify whether
33

the reading was taken before or after the meal. Once entered by pressing the return
key, the user is taken to another screen with a number pad. Next, the user can enter
the blood reading taken from their blood glucose monitor by using the number pad.
If the user entered the number incorrectly, he/she could press the clear key on the
number pad. Once entered, the user would press the enter key on the number pad. The
application would then show a screen that is it processing the information followed by
a new screen that would confirm the information had been entered.

The second action for the diabetic would be the recording of diet. As seen in
Figure 19, this feature is the most complicated for the user. Discussions with dietitians
indicated that they require a journal of recorded diet information that is very detailed
?fd\

J\c\Zk D\Xcj

Diabetes Home
Diet

Exercise

@eglk K`d\

Diet

Meals

Diet

Liquids

Enter

Enter

:feÔidXk`fe

Diet

Lunch

Snacks

Medications

@eglk =ff[

Diet

1

Protiens

1

Small

Portions

Large

Medium

Protiens

portion

Medium

1

Vegetables

portion

Large

X-Large

Enter

Enter

Enter
+ Add Enter

=`^%(0 Navigating the interface: diet
and specific. In contrast, conversations with my small sample population indicated that
this degree of recording is so tedious that it discourages journaling. This contradictory
feedback was a design challenge in that it required simplifying the complex. The
illustrated solution (Fig. 19) seems to work as a temporary placeholder, though with
further testing, it could be modified or changed. In this scenario visualization, the user
would select the diet icon and be taken to the recording screen. First, the user would
select the meal: breakfast, lunch, dinner or snack. This next screen is the most complex
of all the features. The user would select the type of food from a drop-down menu and
input the number of portions using the plus and minus icons. Next, the user would use
a drop-down menu to select the portion size: small, medium, large or extra large. To
simplify the input of food types or the kinds of food consumed, I have thought it best
to only give the user the ability to select foods from the major food groups. Otherwise,
the design of this feature would be too complex for the user to enter all the required
34

information. Men’s Health Magazine mentions that even though individuals who are
trying to lose weight ideally need to record everything they eat, even if they record a
portion as simply small, medium, large and extra large, it is better than not recording
at all (Men’s Health, 2007). The design and complexity of this feature may change
with more work following sample population testing and discussions with dietitians.
However, there is also what might amount to an ultimate simplifier—a cross-check
against diet—which is the daily recording of weight. This data also relates to exercise,
and is discussed below. Also within this feature is the ability to record liquids such
as juices and alcohol, which are important to self-management. These are still under
development and are not illustrated here.

The third action feature is the recording of exercise. This feature takes into
account the activities that would have larger affects on the individual’s Basal Metabolic
Rate (BMR) such as running, cycling, weight lifting, swimming etc. At this time this
application will not have the features that would record low energy activities such
sleeping, knitting, household activities etc. Since this application is being designed
to be individually customized, these low energy activities could be added features in
the future. As can be seen in Figure 20, this feature is much like that of blood glucose.
?fd\

J\c\Zk K`d\

Diabetes Home
Exercise

@eglk D`elk\j

Exercise

:feÔidXk`fe

Exercise

45

Evening

Exercise

45

minutes

Cycling
Evening

Minutes

Medications

Cycling

1

2

3

4

5

6

7

8

9

C

0

Alarms
Enter

Enter

+ Add Enter

=`^%)' Navigating the interface: exercise

Keeping the interface consistent is important to the user navigating the system. The
more familiar one becomes with the software, the less additional learning is needed to
navigate. The user would simply choose the minutes-of-exercise category and input

35

the number of minutes performed for each type of exercise. Different types of exercise
icons include aerobics, running, walking, swimming, cycling and yoga, with a few more
still in the drafting stage.

However, limiting the types is important so the user is not overwhelmed with
too many options requiring more time to input the information. The type of exercise
currently illustrated in the figure is running. To select a different type of exercise, the
user would simply use the drop-down menu. The next data set is the recording of stress
levels. This is still under development but is important to self-management. Studies
show that mental stress can increase blood glucose levels (Diabetes Control for Life,
2008). This makes it important to track and record stress as it will have an affect on
maintaining metabolic control. The third data entry is weight management, which also
relates to maintaining a healthy diet as noted above. This would involve once-a-day
weighing and entry of the weight number. This feature of interface navigation, like that
of recording minutes of exercise, would be like that for blood glucose. Again, time
entries for each of these (e.g., time of day of exercise) would be recorded.

The fourth data set is the recording of medications. As illustrated in Figure 21

?fd\

Diabetes Home
Medications

J\c\Zk K`d\

@eglk ;fjX^\

Medications

500

500

Morning

Metformin

Medications

Medications

Millagrams

Alarms

:feÔidXk`fe

1

2

3

4

5

6

7

8

9

C

0

Metformin

mg

Morning

1000

Diabinese

mg

Morning

Output Maps
Enter

Enter

+ Add Enter

=`^%)( Navigating the interface: medication

on the next page, this follows the same interface navigation as the recording of blood
glucose, etc. The user would select which medications they use by using the dropdown menu and input the number of milligrams they administer. Time of medication
36

would, again, be recorded.

Another feature of this application is to alert and remind the user when, for
example, he/she needs to take a blood glucose reading. The user can set visual
and audible reminders for specific times to take a blood glucose recording. This is
not illustrated but could prove a very important function in reminding the individual of
certain situations for self-management.

This application is not only limited to the illustrated features above. There could
be many additional features built in, such as recording subjective information: sleeping
patterns, rating one’s feeling, pain levels or moments of extreme thirst or dizziness.
However, it is necessary to strike a balance so that there are not too many options
making the software complicated and the activity of journaling cumbersome.

A final comment as to this application’s functions is that the device records all of
the mentioned features, saving and storing all the information so that it can be called
upon by the individual and medical professionals. A future idea for this application
would allow for all data recorded to serve as a digital record of the diabetic’s condition.
Future designs could allow the input of additional medical information such as eye
exam results, blood test results performed by a doctor and time of the exams. This
information would all be recorded in one place (the PDA application) to be called upon
by both the individual and doctor, not only for the diabetic’s family doctor but also
making the recorded medical information digitally and easily transferable to specialists
when there is a referral.

Future potentials for this application would be to create a widget application for
desktop computers. This would allow journaling at home or in the office as an option for
those who may not have or want to use the mobile application device. However, future
designs could offer that all three devices—work computer, home computer and the
mobile device—could be in sync with one another. With the use of current technology,
this could easily be possible. The three always in sync could allow the ready sharing
of information with medical professionals, friends and family. There could be endless
possibilities of this application because it’s created as open-source software, allowing
users’ medical advisors to manipulate and add features according to their needs. This
37

application could take advantage of new and upcoming technologies and continue to
evolve. With advancing technologies in diabetes care, perhaps this software, adapted
for use to type 1 diabetes, could communicate wirelessly with an insulin pump. 6 This
would allow a wireless auto-recording of blood glucose levels and of the administration
of insulin, requiring no manual journaling.

3.3

OUTPUT MAPS

The output feature is a distinctly different feature of the software/PDA device. This
feature would organize, simplify, make visual and establish context for the recorded
diabetic information in the form of a visual map or whole view of the process of the user’s
condition. For example, the user and his/her caregivers could review these maps and
look for patterns and trends. This would be achieved by comparing and contrasting the
recorded data of blood glucose readings and minutes of exercise over a period of time
such as a week—or through other forms of connection and representation, showing
various relationships. The creation of maps could offer diabetics readily accessible
information instead of complex information graphics.

Since the prototyping has remained at the conceptual/paper level, I am not able—
at this stage of what is potentially a large software creation challenge—to present actual
renditions of what the output maps would look like based on my sample population
inputting data into a digital prototype. However, I have designed mock-ups with typical
diabetes information to demonstrate the potential of mapping. The information needs
to be represented in a way so that the user could look for patterns and trends and draw
connections to, for example, eating less for breakfast due to persistently higher blood
glucose levels just prior to lunch. Or due to higher blood glucose levels before lunch,
one could add exercise, such as a short walk in between breakfast and lunch to burn
up the caloric intake accumulated at breakfast. Most diabetics need to try different
patterns in diet, exercise and administering medications in light of variations in blood

6

An insulin pump is a medical device used for the administration of insulin in the
treatment of diabetes mellitus. The insulin pump is an alternative to multiple daily
injections of insulin by insulin syringe or an insulin pen and allows for intensive insulin
therapy when used in conjunction with blood glucose monitoring and carb counting
(Insulin pump, 2008).
38

glucose readings. It is this back-and-forth system of checks and balances that makes
self-management vital to the health of type 2 diabetics. For those who do not journal,
information as to what they ate, what they weighed, how long they exercised, or how
many milligrams of medication they took would often—perhaps nearly always—be
forgotten and lost.

Following are two fictitious scenarios that I have designed that illustrate, one very
simply and one in a somewhat more complex form, how output maps might translate
the application into action for someone with diabetes. These scenarios also take into
account feedback received from my sample population that helped me assess their
goals and behaviors but do not describe any individual.

8e^\cX

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YXZb^ifle[f]k_\j\ZfeZ\iej

39

(

)
Medications

120

Millagrams

1

2

3

4

5

6

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8k()1''g%d%#8e^\cX[\Z`[\jkf^\kjfd\cleZ_% J_\ Xcjf i\Zfi[j n_Xk j_\ `j XYflk kf \Xk `e
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40

,

Blood Glucose

10
1

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0

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15
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1

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Ycff[^clZfj\c\m\cYXZb[fne%

41

0

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Blood Glucose

5
1

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The behaviors and connections illustrated from panels 1–9 for Angela can easily
be set out in a map (not provided here at this stage). In this case, the linkages are so
straightforward that Angela may be aware of the connections before actually creating a
map, and the latter would be helpful mainly to make a record and inform her doctor.

42

;Xe`\c

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k_\YXZb^ifle[f]k_\j\ZfeZ\iej%

*

Blood Glucose Map

)

4 week Period

16

No Meal
8:30 p.m Thursday
April 24, 2008

Target Zone

S

M

Week 1

T

W

T

F

S

S

M

Week 2

T

W

T

F

S

S

M

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T

W

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ZXlj\[k_`j%

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]fik_\_`^_Ycff[^clZfj\i\X[`e^j%

43

*

+

Exercise Map
4 week Period

60

Minutes
90

6:00 p.m Sunday
April 20, 2008
Cycling

75
60
45
30
15

S

M

Week 1

T

W

T

F

S

S

M

Week 2

T

W

T

F

S

S

M

Week 3

T

W

T

F

S

S

M

T

W

T

F

S

Week 4

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,

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Medications
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44

The illustrated scenarios offer insight into self-management for diabetics. The
easy-to-use journaling application with output mapping software as the example
seen in Figure 22, allows individuals to look for related patterns and trends and see

Blood Glucose Map
4 week Period

16

No Meal
8:30 p.m Thursday
April 24, 2008

Target Zone

S

M

Week 1

T

W

T

F

S

S

M

Week 2

T

W

T

F

S

S

M

T

W

T

F

Week 3

S

S

M

T

W

T

F

S

Week 4

=`^%))Blood Glucose Map

connections, and offers a method to problem solve, trying new lifestyle changes
and learning something new in order to meet the needs in self-management. Output
mapping also allows individuals to share their information in a form that is readily and
quickly accessible with their doctor. This puts both on the same page, allowing them
to brainstorm and problem solve, trying out alternatives that might work in maintaining
glycemic control. By producing these maps, individuals have greater ownership over
their condition, which might allow for increased self-efficacy.

45

3.4

CONCLUSION

While focused on type 2 diabetes, the alternative approach to self-management
systems that is discussed in this paper is one that has potential for many other conditions
that require self-management over long periods of time, such as high blood pressure,
morbid obesity, gout or HIV/AIDS—and, of course, with some modifications (such as the
need to keep track of insulin injections), for people living with type 1 diabetes.

Ultimately, the present paper may be thought of as an effort to respond to some
of the researched inadequacies of doctor-patient communication by attempting to bring
design knowledge-in the context of rapidly developing information and communication
technology-to bear on the perception that for some, many doctors and patients are not
on the same page in terms of understanding and applying treatment protocols. The
proposed application tries to mediate the patient/doctor communication dynamic in the
form of a visual intervention. This is important for self-efficacy as the communication
gap dissonance can play special havoc when there is a medical condition that is both
long term and potentially life threatening if self-management fails.

A single master’s thesis, of course, cannot do more than set the problem
and give, hopefully, a sense of how design approaches, and the latest information
technology, might have a major role in contributing a solution. To carry significantly
beyond this point probably requires the labors not of a single individual, but of large
organizations, private or public, that become aware of this fundamental problem and of
the likelihood that solutions exist. The next steps seem to involve the engagement of
such organizations in supporting an effort that should involve collaborations of various
discipline: medical science, information technology, design, software development and
perhaps others.

46

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52

APPENDIX A: LETTER OF INVITATION

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55

APPENDIX C: SUBJECT INFORMATION AND CONSENT

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