Hi everyone, my name is Laurens Boer from the Digital Design Department at the IT University
of Copenhagen in Denmark, and I will present this pictorial that was co-authored with Kasper
Heiselberg from the department of engineering of Aarhus University, and Harvey Bewley from
the Digital Design Department at the IT University Copenhagen.
The title of our pictorial is BGM Diary: supporting subjective experience in blood glucose management
training.
In our pictorial we look into what design can do to support people with diabetes.
Diabetes is a group of metabolic diseases that is characterized by the body s inability
to turn blood sugar into glycogen, resulting in high blood sugar levels.
This can cause dry mouth, weakness, headache, frequent urination, blurred vision or increased
thirst.
Such symptoms of high blood sugar are highly individual.
In this work we focus on Type 2 diabetes.
This type appears more in older adults, and it is often framed as a lifestyle disease,
People with type 2 diabetes are therefore often enrolled in treatment programs to learn
how to live with diabetes.
To manage diabetes people use Blood Glucose Monitoring devices, or BGM devices, to find
out how much insulin they should inject.
There are applications that aim to support people with diabetes, e.g. MySugr, OneDrop,
or GlucoseBuddy.
In our analysis of these apps, we can see that they primarily focus on the quantitative
physiological data, that is gathered from blood glucose measurements.
This is visible in the dominance of graphs and numbers for example.
We can also see that there is functionality that allows people with diabetes to note down
their behaviour and mood.
However, this really is supplementary functionality.
In this work and design research we want to challenge this, and also make aspects related
to subjective experience the focus of attention.
In the pictorial we present these four research activities to address subjective experience
in blood glucose management training: we deconstruct the BGM device to better understand what actually
happens when we do a blood glucose measurement.
And we take a closer look at treatment programs to understand current ways of learning to
live with Type 2 diabetes.
Based on this analysis we propose how design can support subjective experience we propose
the BGM diary.
We then evaluate this proposal with a diabetes nurse to see whether or not we have been successful
in supporting subjective experience.
We started by deconstructing the blood glucose monitoring device.
In particular, the Contour XT, which is a widely used model.
You can apply a drop of blood on the test strip, and through an electrochemical process
that is described in more detail in the pictorial, this Contour XT displays the glucose value.
This is done with an apparent certainty of one digit after the decimal point.
However this is not as accurate as it seems.
The Contour XT has a variance of 0,85 mmol/L between 0 and 5,5 mmol/L, and a 15% variance
for measurements from 5,5 and above.
That means that the actual value of for example 5.2 mmol/L is in the range between 4.4 and
5.9.
In terms of subjective experience, the measurement is however interpreted as a precise outcome,
which can prescribe how the patient should feel, potentially causing unnecessary anxieties.
Following a Type 2 diagnosis, people usually enrol in a treatment program that runs for
a year.
In this treatment program, nurses provide education on diabetes, diet, exercise, and
motivation.
This includes learning how to use the BGM device.
As a supportive tool, diabetes associations in Denmark offer a guess-measure sheet.
On the sheet, the person with diabetes guess their blood sugar before doing their measurement.
Repeating this process several times a day, over several days aims to aid the person with
diabetes in better sensing their blood sugar value.
However, it also underplays the act of reflecting and understanding one s own experience.
Because it, still, reduces the experience to a single digit, and even though this estimate
might be in a range, it does not invite the patient to keep a qualitative record of one
s subjective experience over time.
Instead, it predominantly provides a quantitative account of these experiences.
We thus have these three design insights that can inform design research: 1.
Psychological aspects of diabetes management are not prioritized in current BGM designs,
2.
The apparent preciseness of a BGM device can prescribe how a person with diabetes feels,
and 3.
The guess-measure sheet does not invite for a qualitative reflection on experienced symptoms.
This led us to ideate on how we can support people with Type 2 diabetes differently in
their treatment programs.
By differently we mean, a way that acknowledges the uncertainty of the devices in use, and
the uncertainties that are inherently present when guessing your own blood glucose level.
Formulated as a design brief this is: design a training system for BG; devices for persons
diagnosed with Type diabetes, that supports an understanding of experienced symptoms and
the device s accuracy.
Our design process resulted in the BGM Diary.
This is a diary like product that supports qualitative reflections on experienced symptoms
during a treatment program.
It appears as a notebook.
Its name, form factors, and separation from the BGM device deliberately signal that BGM
Diary is an artefact dedicated to reflective documentation of subjective experiences.
The BGM Diary follows a step-wise logic of guess*-measure*-annotate.
The system thus repeats a similar terminology from existing training programs, yet these
procedures are adjusted to recognize the patients subjective experience.
It works as follows.
Before taking a blood measurement, the slider is used to guess the expected glucose value
in the range from 2 to 24.
A line appears on the left display.
The certainty wheel can be used to indicate the felt level of certainty.
This results in a gradient around the line.
This action captures the uncertainties and complexities that are part of starting to
do blood work.
The BGM device is then plugged into the BGM Diary, and a measurement is taken.
A red line and a gradient around it shows the value and the accuracy of the measurement,
By including the accuracy, the BGM Diary aims to leave more room for interpretation and
more room for reflection on experienced symptoms.
The paper notepad can then be used to write out reflections on experienced symptoms, such
as feeling tired or experiencing stiff joints at respectively low and high blood glucose
levels.
Annotations can also be used to express aspects of subjective experience linked to the disease,
complimentary to the measurements.
The annotations are meant to capture individual experiences over time.
Here follows a scenario.
Thomas, a 62-year-old person with newly diagnosed Type 2 diabetes, finished dinner an hour ago.
He feels heat throughout his body and is thirsty.
Thomas has tried unsuccessfully to drench his thirst in water.
He uses the BGM Diary and guesses that his blood sugar is probably high, but probably
not excessively high - something in the range of 8-10 mmol/L. Thomas sets the slider around
nine and rotates the certainty wheel to show his uncertainty.
He measures his blood glucose and sees that his blood sugar is much higher, at around
13.
13:15.
I felt warm, and I am still so thirsty.
When I measured my blood glucose, it was higher than I expected it to be.
The heat I do not recognize.
When do I feel that?
My blood sugar monitor is at 13,2.
Too High!
The nurse told me I needed to remember to avoid that my blood sugar is crashing too
hard.
I have added an afternoon-snack-meeting in my calendar, so I remember to stabilize it.
The proposal was developed conceptually, and we decided to evaluate it with a diabetes
nurse to get early feedback on its possible value.
In a one hour evaluation with the diabetes nurse we learned three things.
Two positive and one critical.
Positively, the diabetes nurse saw potential in the different way of involving patients
and in externalizing the disease.
On the negative side, the BGM Diary assumed that symptoms remain static after a training
period, which they do not.
This can support a movement towards patient involvement where their perspectives on their
illness come to the forefront of treatment, with shared decision-making playing a large
part of the treatment.
The BGM Diary can involve patients differently.
The BGM Diary could support externalizing aspects of disease management that can be
difficult and taxing in early parts of one s diagnosis.
Symptoms thus fluctuate, They are always affected by the patient s changing lives and bodies.
A short training period for which the BGM Diary was designed might thus not reflect
this.
In summary, How patients, health practitioners and designers model health and related self-care
devices affects how a treatment is seen.
Psychological aspects should be considered in the design of self-care medical devices,
and designers can do so by working from existing practices, procedures, and technologies.
With the BGM Diary, we offer a design research exemplar that addresses subjective experience
surrounding blood glucose measurement, and particularly how symptoms are experienced
individually.
Thank you.