#WeAreNotWaiting Changing the way we research & innovate in - PowerPoint PPT Presentation

#WeAreNotWaiting Changing the way we research & innovate in healthcare @DanaMLewis

Getting diagnosed with a chronic disease is like being struck by lightning. @DanaMLewis @DanaMLewis

Food, hormones, sickness, stress Insulin, exercise, sickness, stress @DanaMLewis

The tools I had were not perfect…. Continuous Glucose Monitor (CGM) Insulin Pump @DanaMLewis @DanaMLewis

Because this is what it takes to wake me up: @DanaMLewis

Leaving me often with this: @DanaMLewis

If we can’t change existing devices… what if we could add *new* tools? @DanaMLewis

Enter open source (and social media). @DanaMLewis

From reactive to predictive: an “open loop” @DanaMLewis

We already have in our pockets the tools needed for an “artificial pancreas”. @DanaMLewis

Components of an open source artificial pancreas • Continuous glucose monitor • Insulin pump @DanaMLewis

Components of an open source artificial pancreas 1. Continuous glucose monitor 2. Computer (“controller”) 3. Battery 4. Radio stick (“translator”) 5. Insulin pump @DanaMLewis (Illustration by Clint Ford for Popular Science)

Manual diabetes: 3. Do math about what 4. Give more/less action is needed insulin, or eat food 2. Read data from pump 1. Read data from CGM 5. Do it again.. and again... and again... @DanaMLewis

Automated diabetes: 3. Do math about what action is needed 4. Give more/less insulin Computer 2. Read data from pump 1. Read data from CGM 5. Do it again.. and again... and again... (human doesn’t have to pay constant attention, but still @DanaMLewis checks in from time to time)

Before: Aft fter:

(insulin pump) OpenAPS “rig” @DanaMLewis www.OpenAPS.org (continuous glucose monitor)

#OpenAPS is an open and transparent effort to make safe and effective basic Artificial Pancreas System (APS) technology widely available to reduce the burden of Type 1 diabetes. @DanaMLewis

“Well, it works for you, but....” @DanaMLewis

In 2016, we presented a self-reported outcomes study at #2016ADA, and also published the study.

“Can you share your data with us?” @DanaMLewis

There are now ( n=1 ) *796+ people with DIY closed loops in the world. (That’s something like 5,800,000+ hours of DIY closed loop experience.) @DanaMLewis

@DanaMLewis

Results: Overall Self-crossover comparison of selected 14-day time segments +/- 4-6 weeks from OpenAPS initiation (n=20) Control OpenAPS P-value Mean BG 135.7 (22.3) 128.3 (18.9) 0.0084 Mean Estimated HbA1c 6.4 (0.78) 6.1 (0.66) 0.0084 Time (%) below 50 1.9 (2.3) 1.1 (1.5) 0.0399 Time (%) below 70 6.0 (4.3) 4.5 (3.9) 0.1248 Time (%) in range 70 to 180 75.8 (14.9) 82.2 (11.1) 0.0042 Time (%) above 180 18.3 (13.9) 13.3 (11.1) 0.0092 Time (%) above 250 5.0 (5.4) 2.5 (3.3) 0.0138 Time (%) above 300 1.7 (2.3) 0.35 (0.57) 0.0138 @DanaMLewis #2018ADA Mean [SD]

Sustained improvements in average BG @DanaMLewis #2018ADA

@sulka script assessing changes in treatments https://github.com/sulkaharo/oref0-tools 2018: Pre-OpenAPS: 0.7 manual 4.5 manual interventions/ interventions/ day day (85% reduction) @DanaMLewis #2018ADA

@jb jbwittmer on QOL im improvements of f #OpenAPS: • Annual School Nurse visits • 4 th grade - before OpenAPS -- 420 visits (2.3/day) • 354 “routine” visits for pre -lunch or pre-gym checks and decisions • 66 visits for hypo- or hyper-glycemic events • 6 th grade - with OpenAPS – 5 visits (0.027/day) • 3 gym-class associated hypoglycemic events • 2 equipment malfunction (CGM/OpenAPS rig)

Not tradit itional.. .. But yet we are: • Engineers • Engineers • Programmers • Developers • Scientists • Scientists • Researchers • Researchers • Rocket Scientists • Inventors @DanaMLewis

(M (Me, , anyt ytime someone says “but you’re not a _______”.) @DanaMLewis Flickr: @gumuz

Beware the patient syndrome trap: What people think What patients actually know: Imposter syndrome: patients know: med device co’s What people What we think patients pharma know know government What we think everyone What people think else knows insurers ”professionals” know caregivers HCPs researchers @DanaMLewis

Traditional innovation @DanaMLewis

Traditional innovation @DanaMLewis User-driven innovation

How might the world change if we leverage these collective innovations that happen every day? @DanaMLewis

What happens when we enable patients to prioritize what we research and design solutions around? @DanaMLewis

What happens when we surface and share data openly so anyone – regardless of “role” or credentials – can use it to improve things? @DanaMLewis

What if we all say #WeAreNotWaiting to change the world like this? @DanaMLewis

# WeAreNotWaiting to change the future of healthcare. But we can do it faster, together. Will you help us? #OpenAPS | @DanaMLewis | www.DIYPS.org | www.OpenAPS.org