Post on 20-Jan-2017
@theEdgeNHS | #EdgeTalks
THE MAKER MOVEMENT: A MODEL FOR HEALTHCARE
TRANSFORMATION?
Joyce Lee
Friday 1st July 2016 at 9.30am BST
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The team today
Chat room monitorCarol Read @CarolLRead
Twitter monitor Olly Benson@ollybenson
Session chairDom Cushnan@DomCushnan
Our presenters
Joyce Lee @Joyclee
Our Next Edge Talks
August 5th Sue Haines Talent management
September 2nd Maxine Craig Culture and Change
The Maker Movement: A Model for Healthcare
Transformation?
Joyce Lee, MD, MPHhttp://www.doctorasdesigner.com/Twitter:
@joyclee
Agenda
The Maker Movement and Participatory Design
The Nightscout ProjectResearch (Ethnography, Survey, Secondary
analysis of Social Media)
Design and Making as a Healthcare Platform
Agenda
The Maker Movement and Participatory Design
The Nightscout ProjectResearch (Ethnography, Survey, Secondary
analysis of Social Media)
Design and Making as a Healthcare Platform
JAMA PediatricsVerily Samuelson Associates Unitio
Disclosures
Associate Professor, Pediatric Endocrinologist
Health Outcomes/Clinical Researcher Learning Health SystemsMobile Technology/Data VisualizationParticipatory Design/Social Media
Quality Improvement Director for Pediatric Diabetes
Background
“Folk in black turtlenecks and designer glasses working on small things like the Apple
Watch”
-Tim Brown
No Formal Training in Design
A PersonalDesign Experiment
“B”
#design #fail
#lazytigermother
http://ihavefoodallergies.tumblr.com
700+ students & 40 teachers
“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
B’s Trilogy Part 2:Ingredients and Food Handling
B’s Trilogy Part 3: Asthma
Patient as
expertmaker
collaborator
#futureofhealthcare
Healthdesignby.us
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
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”
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”
Who’s the real expert?
Interdisciplinary Design Workshops“Committee Work”
Curricular Collaborations:Swift iOS programming
Digital Game Design
EmpathyUnderstand a problem
before solving it
DefinePatient-defined problem
IdeateCollaborative, creative
brainstorming
PrototypeSketch, draw, glue, code
TestIterative Feedback from User
www.diabetesemoticons.com
http://umsickapp.info/
http://bit.ly/umpump
Design=Distraction from Health
A critical tool for the creation of health
Maker Movement
Do It Yourself (DIY)
Learning by Doing
Peer-to-Peer
“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
Maker Movement
ParticipatoryDesign=
DIY = Expert
Learning by doing = Maker
Peer-to-Peer = Collaborator
@SusannahFox @jfgm @annakyoung
Design/Maker WorkshopsDiabetes Education
Design/Maker WorkshopsApps Design by Teens
Participatory Game Designin Diabetes Clinic
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
Agenda
The Maker Movement and Participatory Design
The Nightscout ProjectResearch (Ethnography, Survey, Secondary
analysis of Social Media - University of Michigan IRB)
Design and Making as a Healthcare Platform
Wrote Original code for CGM
Wrote Original code for CGM
BlogTwitter
Wrote Original code for CGM
Blog
ContractorIn India
Elance.comTwitter
Wrote Original code for CGM
Blog
ContractorIn 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"
Blog
Wrote Original code for CGM
ContractorIn India
Elance.com
Facebook post
“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”
Blog
Wrote Original code for CGM
Started CGM in the
Cloud FB Group
ContractorIn India
Elance.com
Facebook post
#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
“…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 TechnologySkin RashesBlood Sugar Patterns and ManagementIssues with the
School NurseEndocrinologistInsurance
ItalyUK SwedenBulgariaSpainCanadaAustraliaFinlandCzech+Slovakia
New ZealandCroatiaIsraelSouth AfricaHungaryFranceSwitzerlandBelarusJapanKorea
18,000 + 7,710 = 25,710 US Int’l
Poland
RomaniaDenmarkPortugalTurkeyRussiaNorwayBrasilGermany
Open Source Code“What one person knows, everybody knows…So it’s travelling at the speed of light.”
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
Leadership Team
Features: 10 Apple Pie ->
152 Funnel Cake
Amy Cowen
Nightscout Product Roadmap
Core Development Team
Support Team
Apr-14
May-14
Jun-14
Jul-1
4
Aug-14
Sep-14
Oct-14
Nov-14
Dec-14
Jan-15
Feb-15
Mar-15
Apr-15
May-15
Jun-15
Jul-1
5
Aug-15
Sep-15
Oct-15
Nov-15
Dec-15
Jan-16
Feb-16
Mar-16
Apr-16
0
100
200
300
400
500
600
Month-Year of first post
New
Use
rs b
y Po
st
New The End of Nightscout?
New Members to FB group via 1st Post
Xdrip
0-5 y 6-12 y 13-17 y
≥ 18 y0.0
2.0
4.0
6.0
8.0
10.0
12.010.1
8.88.1 7.6
8.97.8
7.1 6.8
Before NSAfter NS
Self-reported HbA1c average Self-reported HbA1c average
Excludes CGM users <6 months
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?
Agenda
The Maker Movement and Participatory Design
The Nightscout ProjectResearch (Ethnography, Survey, Secondary
analysis of Social Media)
Design and Making as a Healthcare Platform
ProfessionalDesign
ParticipatoryDesign
Human-Centered
Design
MakerMovement
(Meta-Design)
Healthcare Delivery & Biomedical Research
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
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
MD to PatientPassiveSolitary
Patient to PatientActive
Collaborative
Health
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: @joycleehttp://www.doctorasdesigner.comhttp://www.healthdesignby.us/#makehealth
It Takes a Virtual Village
Our Next Edge Talks
August 5th Sue Haines Talent management
September 2nd Maxine Craig Culture and Change