1. @theEdgeNHS | #EdgeTalks
THE MAKER MOVEMENT: A
MODEL FOR HEALTHCARE
TRANSFORMATION?
Joyce Lee
Friday 1st July 2016 at 9.30am BST

2. Joining in today and beyond
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3. The team today
Chat room monitor
Carol Read
@CarolLRead
Twitter monitor
Olly Benson
@ollybenson
Session chair
Dom Cushnan
@DomCushnan

4. Our presenters
Joyce Lee
@Joyclee

5. Our Next Edge Talks
August 5th
Sue Haines
Talent management
September 2nd
Maxine Craig
Culture and Change

6. The Maker Movement:
A Model for Healthcare
Transformation?
Joyce Lee, MD, MPH
http://www.doctorasdesigner.com/Twitter
: @joyclee

7. Agenda
The Maker Movement and Participatory Design
The Nightscout Project
Research (Ethnography, Survey, Secondary
analysis of Social Media)
Design and Making as a Healthcare Platform

8. Agenda
The Maker Movement and Participatory Design
The Nightscout Project
Research (Ethnography, Survey, Secondary
analysis of Social Media)
Design and Making as a Healthcare Platform

9. JAMA Pediatrics
Verily
Samuelson Associates
Unitio
Disclosures

10. Associate Professor, Pediatric Endocrinologist
Health Outcomes/Clinical Researcher
Learning Health Systems
Mobile Technology/Data Visualization
Participatory Design/Social Media
Quality Improvement Director for Pediatric Diabetes
Background

11. “Folk in black turtlenecks and
designer glasses working on
small things like the Apple
Watch”
-Tim Brown
No Formal Training in Design

12. A Personal
Design Experiment

13. “B”

14. #design #fail

16. #lazytigermother

17. http://ihavefoodallergies.tumblr.com

21. 700+ students
& 40 teachers

23. “Two videos recently impressed
me with their use of illustration
and narration to educate an
audience about health…What
interests me is how approachable
and informative they are,
regardless of the production
value.”
-Susannah Fox

24. B’s Trilogy Part 2:
Ingredients and Food Handling

25. B’s Trilogy Part 3: Asthma

28. Patient as
expert
maker
collaborator
#futureofhealthcare

29. Healthdesignby.us

30. To integrate design thinking into
the medical enterprise and to
promote the participation of
makers in the healthcare
landscape
To partner with patients and
caregivers to create opportunities
for participatory design, citizen
science, and open science research
To provide tools and technology-
based systems for transforming the
patient experience
Education
Research
Clinical

31. Empathy PrototypeDefine Ideate Test
Human-Centered Design
”An approach that puts human needs, capabilities,
and behavior first, then designs to accommodate
those needs, capabilities, and ways of behaving”

32. 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”

33. Who’s the real expert?

34. Interdisciplinary Design Workshops
“Committee Work”

35. Curricular Collaborations:
Swift iOS programming
Digital Game Design

36. Empathy
Understand a problem
before solving it

37. Define
Patient-defined problem

38. Ideate
Collaborative, creative
brainstorming

39. Prototype
Sketch, draw, glue, code

40. Test
Iterative Feedback from User

41. www.diabetesemoticons.com

43. http://umsickapp.info/
http://bit.ly/umpump

44. Design=
Distraction from Health
A critical tool for the creation of health

46. Maker Movement
Do It Yourself (DIY)
Learning by Doing
Peer-to-Peer

53. “Being a maker is not taking
the world as it is”
-Dale
Dougherty
“The essential democratization of the
technology has happened; once you
put the tools in the hands of
everybody, it liberates the ideas and
creativity of so many people”
-Chris Anderson

54. Maker
Movement
Participatory
Design
=

55. DIY = Expert
Learning by doing = Maker
Peer-to-Peer = Collaborator

57. @SusannahFox @jfgm @annakyoung

58. Design/Maker Workshops
Diabetes Education
Design/Maker Workshops
Apps Design by Teens
Participatory Game Design
in Diabetes Clinic

59. Design Insights
We are all designers (patients/caregivers/HCPs)
Design WITH and not FOR patients/caregivers by
inviting them to the table
Make design a part of the workflow
Design with members of a different tribe
Embrace the maker movement

60. Agenda
The Maker Movement and Participatory Design
The Nightscout Project
Research (Ethnography, Survey, Secondary
analysis of Social Media - University of Michigan
IRB)
Design and Making as a Healthcare Platform

65. Wrote Original code
for CGM
Twitter
Twitter

66. Wrote Original code
for CGM
Twitter
Blog
Twitter

67. Wrote Original code
for CGM
Twitter
Blog
Contractor
In India
Elance.comTwitter

68. Wrote Original code
for CGM
Twitter
Blog
Contractor
In India
Elance.com
"Hi the job was too simple I
have already deployed it for
you. You can pay whatever
little amount that you may
like to play. Elance is not
allowing to bid less than
$20"
Twitter

69. Blog
Wrote Original code
for CGM
Contractor
In India
Elance.com
Facebook
post
Twitter
Twitter
“So, I saw her, she saw too right what this could
do to change her life…so I actually went home
that night and messaged xxx and said, can we
set up another one”

70. Blog
Wrote Original code
for CGM
Started
CGM in the
Cloud FB
Group
Contractor
In India
Elance.com
Facebook
post
Twitter
Twitter

75. #WeAreNotWaiting…
…while our endocrinologist tries to assemble the
disjointed pieces of the data puzzle
…for regulators to regulate
…for device manufacturers to innovate
…for peace of mind that our children with type 1
diabetes are safe

76. “…organically a support group came out of the
community [and] was basically working
24/7…Somebody would always be monitoring the
Facebook page…”
Technical Troubleshooting for Nightscout
General Diabetes Technology
Skin Rashes
Blood Sugar Patterns and Management
Issues with the
School Nurse
Endocrinologist
Insurance

80. Italy
UK
Sweden
Bulgaria
Spain
Canada
Australia
Finland
Czech+Slovakia
New Zealand
Croatia
Israel
South Africa
Hungary
France
Switzerland
Belarus
Japan
Korea
18,000 + 7,710 = 25,710
US Int’l
Poland
Romania
Denmark
Portugal
Turkey
Russia
Norway
Brasil
Germany

82. Open Source Code
“What one person knows, everybody knows…So it’s
travelling at the speed of light.”

83. Collaborative Innovation Network
A cyberteam of self-motivated people with a
collective vision, enabled by the Web to
collaborate in achieving a common goal by
sharing ideas, information, and work

84. Leadership Team

85. Features:
10 Apple Pie ->
152 Funnel Cake
Amy Cowen
Nightscout Product Roadmap
Core Development Team

86. Support Team

87. 0
100
200
300
400
500
600
NewUsersbyPost
Month-Year of first post
NewThe End of Nightscout?
New Members to FB group via 1st Post

94. Xdrip

98. 10.1
8.8
8.1
7.6
8.9
7.8
7.1
6.8
0.0
2.0
4.0
6.0
8.0
10.0
12.0
0-5 y 6-12 y 13-17 y ≥ 18 y
Before NS
After NS
Self-reported HbA1c averageSelf-reported HbA1c average
Excludes CGM users <6 months

99. A Maker Movement for Diabetes
Patients/caregivers as lead innovators
A Model for Personalized Medicine (Devices,
wearables, mobile apps)
Sharing of open source code through Github and
sharing of knowledge through social media
How do we translate this knowledge to research
and care delivery?

100. Agenda
The Maker Movement and Participatory Design
The Nightscout Project
Research (Ethnography, Survey, Secondary
analysis of Social Media)
Design and Making as a Healthcare Platform

101. Professional
Design
Participatory
Design
Human-
Centered
Design
Maker
Movement
(Meta-Design)
Healthcare Delivery & Biomedical Research

102. Meta-design (Gerhard Fischer)
“Design for designers”
Users become co-designers and co-developers
The meta-designers design systems explicitly for
evolution
http://l3d.cs.colorado.edu/~gerhard/papers/2013/EUD.pdf

104. Meta-design Objectives
Changes must seem possible
Changes must be technically feasible (open systems)
Benefits must be perceived
Environments must support people’s actual tasks
Barriers to sharing changes must be low

105. MD to Patient
Passive
Solitary
Patient to Patient
Active
Collaborative
Health

106. Valerie Castle, Ram Menon, Nancy Benovich
Gilby, Emily Hirschfeld, Ashley Garrity, Matt
Kenyon, Preciosa Choi, Sarah Clark, Peter
Honeyman, Liz Kaziunas, Ben West, Dana Lewis,
John Costik, James Wedding, Weston Nordgren,
Ken Stack, CGM in the Cloud Community
Twitter: @joyclee
http://www.doctorasdesigner.com
http://www.healthdesignby.us/
#makehealth
It Takes a Virtual Village

107. Our Next Edge Talks
August 5th
Sue Haines
Talent management
September 2nd
Maxine Craig
Culture and Change