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Joyce Lee, MD, MPH
Doctor as Designer
Twitter: @joyclee
@healthbyus #vutechtalk
Medical Doctor as
Maker Designer
Participatory Design for
Healthcare
I have no ties to any
pharmaceutical companies
Social Media/Web Editor
of JAMA Pediatrics
Obesity & Type 2 Diabetes:
Biomarkers/Child Health Policy
Type 1 Diabetes:
Learning Health Systems
Mobile Technology/Data Visualization/
Participatory Design/Online Communities
“Folk in black turtlenecks and
designer glasses working on small
things like the Apple Watch” -TB
This is a medical designer
“A pediatric endocrinologist who
spends her days seeing patients in
clinic and writing grants & papers that
no one will ever read?”
This is a medical designer?
No black turtleneck?
No designer glasses?
Part 1: A Personal
Design Experiment
“B”
#design #fail
#lazytigermother
700+ students
& 40 teachers
#designsuccess
#proudtigermother
1769 views!
http://ihavefoodallergies.tumblr.com
B’s Trilogy Part 2:
Ingredients and Food Handling
B’s Trilogy Part 3: Asthma
#design #fail
Design
Insights
about the Production of
Health and the Future
of Medicine
We were
experts
We were
makers
We were
collaborators
Patient as
expert
maker
collaborator
#futureofhealthcare
Part #2 of the journey:
“Learning to design
is learning to see”
-Oliver Reichenstein
#design #suckiness
The needle
is opposite
to the cap,
which is
counter-
intuitive
Design Flaw #1
>15,000
Unintentional injections
from Epi-Pens in the US
between 1994-2007
There were
0
500
1000
1500
2000
2500
3000
< 6 yrs
6-12 yrs18-64 yrs
Total
13-17 yrs
>64 yrs
Unintentional Injections with
Epinephrine auto-injectors
Simons, 2010
Greenberg, 2010
“A large number of health care
professionals including nurses,
p a r a m e d i c s , a n d p h y s i c i a n s
inadvertently self-inject while
attempting to administer the EpiPen
to patients…
“365 injections over 6 years in 1
poison ctr”
Life or
death is
stressful!
Don’t make
me think!
Design Flaw #2
It’s an
awkward
size, &
doesn’t fit
in your
pockets
Design Flaw #3
Blackberry iPhone
Redesign #1
Redesign #2
Redesign #3
It was designed by patients!
“patients frequently do not understand
how and when to use [the epi-pen].”
Sicherer, 2011 
In medicine, we often
blame the patient
“patients frequently do not understand
how and when to use [the epi-pen].”
Sicherer, 2011 
But is it a patient problem or
is it a design problem?
The needle
is opposite
to the cap,
which is
counter-
intuitive
Sicherer, 2011 
In medicine, we often
blame the patient
“Children had only used their EpiPen device
in 29% of recurrent anaphylaxis reactions.
This is perhaps unsurprising because a fear
of needles/injections is common”
“Children had only used their EpiPen device
in 29% of recurrent anaphylaxis reactions.
This is perhaps unsurprising because a fear
of needles/injections is common”
Sicherer, 2011 
But is it a patient problem or
is it a design problem?
Life or
death is
stressful!
Don’t make
me think!
“patients often forget [the device], 
allow it to expire” 
Sicherer, 2011 
In medicine, we often
blame the patient
But is it a patient problem or
is it a design problem?
“patients often forget [the device], 
allow it to expire” 
Sicherer, 2011 
It’s an
awkward
size, &
doesn’t fit
in your
pockets
Patient problems
are really
design problems
Fix the design,
and it’s no longer the
patient’s problem
Let patients and caregivers
design, and they will
fix the problem!
The Nightscout
Project
75%
of children fail to achieve
recommended blood sugar
goals in Type 1 Diabetes
75%
of healthcare providers/
systems fail to help children
achieve recommended blood
sugar goals in Type 1 Diabetes
Part #3 of the
Journey
#polarvortex
Healthdesignby.us
Human-Centered
Design Thinking
”An approach that puts
human needs, capabilities,
and behavior first, then
designs to accommodate
those needs, capabilities,
and ways of behaving”
Participatory Design
”an approach to design
attempting to actively
involve all stakeholders in
the design process to help
ensure the result meets their
needs and is usable”
Committee Work:
“Communications to Improve
Clinical Care”
Interdisciplinary Workshops:
“Design My Diabetes Solution”
Community Events:
“My Dream Diabetes Device”
Empathy PrototypeDefine Ideate Test
Empathy
Understand a problem
before solving it
Define
Patient-defined problem
Ideate
Collaborative, creative
brainstorming
Prototype
Sketch, draw, glue, code
Test
Iterative Feedback from User
Design=
Distraction from Health
A critical tool for the creation of health
Maker Movement
Do It Yourself (DIY)
Learning by Doing
Peer-to-Peer
Maker
Movement
Participatory
Design
=
DIY = Expert
Learning by doing = Maker
Peer-to-Peer = Collaborator
The Secret Life of
Medical Devices
We #makehealth Fest
Expert
“Doctors are
experts,
not patients	
  
	
  
#cultureofhealthcare
“Only certified health
professionals should
be creating health”	
  
	
  
Maker
#cultureofhealthcare
“Health is
created doctor
TO patient”	
  
Collaborator
#cultureofhealthcare
“IT said you
can’t do that!”	
  
#cultureofhealthcare
MD to Patient
Passive
Solitary
Patient to Patient
Active
Collaborative
You are a designer
I don't feel like getting
yelled at today
he makes me feel stupid
“Don't cry
(says a boy to his mom)”
#waitingwaitingwaiting
Design WITH and not
FOR Patients
Integrate design into
your daily workflow
Design with members
of a different tribe,
not your own
“it can also come off
as arrogant when a
d e s i g n e r f a i l s t o
respect the solutions
that already exist,
particularly those that
have evolved from
within a community.”
Check your ego at the door
HealthDesignBy.Us
Twitter: @healthbyus
@joyclee
Our patient experts, John Marshall, Matt Kenyon,
Patricia Anderson, Nancy Benovich Gilby, Emily
Puckett Rogers, Scott Olson, Amy Cohn, Patricia
Abbott, Kelly Parent, John Costik, Jose Gomez-
Marquez, Emily Hirschfeld, Charles Woodson
Research Fund, UM Provost, & the
healthdesignby.us virtual community
#designthinkinghellokitty

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