July Edge Talk - The Maker Movement - a model for healthcare transformation? Dr Joyce Lee

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

Transcript of July Edge Talk - The Maker Movement - a model for healthcare transformation? Dr Joyce Lee

Page 1: July Edge Talk - The Maker Movement - a model for healthcare transformation? Dr Joyce Lee

@theEdgeNHS | #EdgeTalks

THE MAKER MOVEMENT: A MODEL FOR HEALTHCARE

TRANSFORMATION?

Joyce Lee

Friday 1st July 2016 at 9.30am BST

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Joining in today and beyond• Please use the chat box to contribute

continuously during the web seminar

• Please tweet using hashtag #EdgeTalks and the handle @School4Radicals @theEdgeNHS

• Send a request to join our Facebook group School for Health and Care Radicals and The Edge NHS

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The team today

Chat room monitorCarol Read @CarolLRead

Twitter monitor Olly Benson@ollybenson

Session chairDom Cushnan@DomCushnan

Page 4: July Edge Talk - The Maker Movement - a model for healthcare transformation? Dr Joyce Lee

Our presenters

Joyce Lee @Joyclee

Page 5: July Edge Talk - The Maker Movement - a model for healthcare transformation? Dr Joyce Lee

Our Next Edge Talks

August 5th Sue Haines Talent management

September 2nd Maxine Craig Culture and Change

Page 6: July Edge Talk - The Maker Movement - a model for healthcare transformation? Dr Joyce Lee

The Maker Movement: A Model for Healthcare

Transformation?

Joyce Lee, MD, MPHhttp://www.doctorasdesigner.com/Twitter:

@joyclee

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Agenda

The Maker Movement and Participatory Design

The Nightscout ProjectResearch (Ethnography, Survey, Secondary

analysis of Social Media)

Design and Making as a Healthcare Platform

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Agenda

The Maker Movement and Participatory Design

The Nightscout ProjectResearch (Ethnography, Survey, Secondary

analysis of Social Media)

Design and Making as a Healthcare Platform

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JAMA PediatricsVerily Samuelson Associates Unitio

Disclosures

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Associate Professor, Pediatric Endocrinologist

Health Outcomes/Clinical Researcher Learning Health SystemsMobile Technology/Data VisualizationParticipatory Design/Social Media

Quality Improvement Director for Pediatric Diabetes

Background

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“Folk in black turtlenecks and designer glasses working on small things like the Apple

Watch”

-Tim Brown

No Formal Training in Design

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A PersonalDesign Experiment

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“B”

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#design #fail

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#lazytigermother

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http://ihavefoodallergies.tumblr.com

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700+ students & 40 teachers

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“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

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B’s Trilogy Part 2:Ingredients and Food Handling

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B’s Trilogy Part 3: Asthma

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Patient as

expertmaker

collaborator

#futureofhealthcare

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Healthdesignby.us

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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

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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”

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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”

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Who’s the real expert?

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Interdisciplinary Design Workshops“Committee Work”

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Curricular Collaborations:Swift iOS programming

Digital Game Design

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EmpathyUnderstand a problem

before solving it

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DefinePatient-defined problem

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IdeateCollaborative, creative

brainstorming

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PrototypeSketch, draw, glue, code

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TestIterative Feedback from User

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www.diabetesemoticons.com

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http://umsickapp.info/

http://bit.ly/umpump

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Design=Distraction from Health

A critical tool for the creation of health

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Maker Movement

Do It Yourself (DIY)

Learning by Doing

Peer-to-Peer

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“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

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Maker Movement

ParticipatoryDesign=

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DIY = Expert

Learning by doing = Maker

Peer-to-Peer = Collaborator

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@SusannahFox @jfgm @annakyoung

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Design/Maker WorkshopsDiabetes Education

Design/Maker WorkshopsApps Design by Teens

Participatory Game Designin Diabetes Clinic

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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

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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

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Page 62: July Edge Talk - The Maker Movement - a model for healthcare transformation? Dr Joyce Lee
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Wrote Original code for CGM

Twitter

Twitter

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Wrote Original code for CGM

Twitter

BlogTwitter

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Wrote Original code for CGM

Twitter

Blog

ContractorIn India

Elance.comTwitter

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Wrote Original code for CGM

Twitter

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"

Twitter

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Blog

Wrote Original code for CGM

ContractorIn 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”

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Blog

Wrote Original code for CGM

Started CGM in the

Cloud FB Group

ContractorIn India

Elance.com

Facebook post

Twitter

Twitter

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#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

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“…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

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ItalyUK SwedenBulgariaSpainCanadaAustraliaFinlandCzech+Slovakia

New ZealandCroatiaIsraelSouth AfricaHungaryFranceSwitzerlandBelarusJapanKorea

18,000 + 7,710 = 25,710 US Int’l

Poland

RomaniaDenmarkPortugalTurkeyRussiaNorwayBrasilGermany

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

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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

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Leadership Team

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Features: 10 Apple Pie ->

152 Funnel Cake

Amy Cowen

Nightscout Product Roadmap

Core Development Team

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Support Team

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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

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Xdrip

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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

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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?

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Agenda

The Maker Movement and Participatory Design

The Nightscout ProjectResearch (Ethnography, Survey, Secondary

analysis of Social Media)

Design and Making as a Healthcare Platform

Page 101: July Edge Talk - The Maker Movement - a model for healthcare transformation? Dr Joyce Lee

ProfessionalDesign

ParticipatoryDesign

Human-Centered

Design

MakerMovement

(Meta-Design)

Healthcare Delivery & Biomedical Research

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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

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Page 104: July Edge Talk - The Maker Movement - a model for healthcare transformation? Dr Joyce Lee

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

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MD to PatientPassiveSolitary

Patient to PatientActive

Collaborative

Health

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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

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Our Next Edge Talks

August 5th Sue Haines Talent management

September 2nd Maxine Craig Culture and Change