Patients as Partners: Engaging People in Their Care

Joyce Lee MD, MPH

Panel Discussion with Dee Edington

I have no ties to any pharmaceutical companies

Social Media/Web Editor

of JAMA Pediatrics

Clinical/Health Services Research Obesity/Diabetes

Mobile Technology/Online Communities

Design of QI/Learning Health Systems

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

Apple Watch

Medical Designer?

“B”

Healthcare Problem #1

“Patients frequently do not understand how and when to use [the epi-pen].”

Sicherer, 2011

Design Flaw #1

>15,000 Unintentional injections From Epi-Pens in the US

between 1994-2007

“Including nurses, paramedics, and physicians”

Healthcare Problem #2

“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

Design Flaw #2

Healthcare Problem #3

“patients often forget [the device], allow it to expire”

Sicherer, 2011

Design Flaw #3

Blackberry iPhone

Is it a Patient Problem?

-or-

Is it a Healthcare System Design Problem?

Redesign #1

Redesign #2

“To inject place black end into outer thigh.

5-4-3-2-1 Injection complete.

Seek emergency medical attention”

Redesign #3

Patient problems are really

design problems

Joyce Lee, MD Medical Designer

Fix the design, and it’s no longer the

patient’s problem

Joyce Lee, MD Medical Designer

Let patients and caregivers design, and they will

fix the problem!

The Nightscout Project

What are some of the current shortfalls in the design of the

healthcare system?

How can consumers/patients be more in the conversation,

what kind of insights can they provide that the

consultants and employers and providers can’t?

User-centered Design

What are the key challenges to employers/patients to making better health care decisions? How do we properly align incentives and values so we are making progress?

Learning Health Systems

Quality Improvement (Outcomes)

Knowledge Networks (Virtual/In person)

Tools (Real-time metrics/pt-facing tools)

What are some innovations or disruptors that you see

changing the health care landscape?

CGM in the Cloud (Facebook Group) 12,000 members

Only pt with NGLY-1 16 cases worldwide

Parent group as organized Preliminary Treatments

Clinical Trials

How do you compel employees to make long-term behavioral changes to improve their long-

term health?

The End of Sitting Rietveld Architecture-Art Affordances