#wearenotwaiting - call to action by howard look @ the diabetesmine d-data exchange june 2014

#WeAreNotWaitingHoward Look

President, CEO and Founder, Tidepool

#WeAreNotWaiting

#WeAreNotWaiting…for peace of mind that our children with

type 1 diabetes are safe. !

…to allow PWDs to have a choice in how they see their own diabetes data.

!… to bring together the best and brightest minds from around the world to help make

things better for PWDs.

Who owns the data?

What data are we talking about, anyway?

How is the data accessed?How do we assess safety

and efficacy ?

Why is this all so important, anyway?

Who owns the data?

Who owns the data?

“It’s my disease, it’s my data.”

What data are we talking about, anyway?

Personal Health Data

Contextual Data

Diagnostic, Safety, Efficacy, Proprietary Data

Device Identification Data

BG data basal rate settings

insulin to carbohydrate ratios insulin sensitivity factors

basal rate change events bolus and bolus wizard events

settings change events …

Personal Health Data

Contextual Data

location activity tracker

meal information calendar events

…

Device Identification Data

device ID brand

model and revision …

ISIG values pump occlusion pressure

internal temperature battery recharge cycles

internal error logs

Internal, Diagnostic, Safety, Efficacy Data

http://commons.wikimedia.org/wiki/Category:Crying_babies#mediaviewer/File:Waaah!.jpg

http://commons.wikimedia.org/wiki/File:The_ladder_of_life_is_full_of_splinters.jpg

!!!!!!!Does the patient own their own health data?

!!!!!!Can patients donate and repurpose their data? !Does the patient own their own health data?

“Any data submitted through [the service] shall be property

of [the service], and you hereby waive all right, title and interest to the submitted data.”

“Any data submitted by you through our service is owned by you.

We are stewards of your data. !

If you’d like to make your data accessible to someone else, or to different software,

just let us know. !

If you’d like to donate your data to an anonymous research database,

just let us know.”

!!!!Cloud Services - machine accessible APIs? Devices - documented protocol? !Can patients donate and repurpose their data? !Does the patient own their own health data?

!!!Devices - allow identification? !Cloud Services - machine accessible APIs? Devices - documented protocol? !Can patients donate and repurpose their data? !Does the patient own their own health data?

!!Data format/protocols complete and unambiguous? !Devices - allow identification? !Cloud Services - machine accessible APIs? Devices - documented protocol? !Can patients donate and repurpose their data? !Does the patient own their own health data?

!Provide safety/efficacy/diagnostic data? !Data format/protocols complete and unambiguous? !Devices - allow identification? !Cloud Services - machine accessible APIs? Devices - documented protocol? !Can patients donate and repurpose their data? !Does the patient own their own health data?

Source code available for inspection? !Provide safety/efficacy/diagnostic data? !Data format/protocols complete and unambiguous? !Devices - allow identification? !Cloud Services - machine accessible APIs? Devices - documented protocol? !Can patients donate and repurpose their data? !Does the patient own their own health data?

A!device

B!device

C!device

D!cloud

E!cloud

Open!dev+cloud

Open Source? ✗ ✗ ✗ ✗ ✓ ✓Safety and

Efficacy data? ✗ ✗ ✗ ✗ ✓ ✓Protocol

complete? ✓ ✗ ✓ ✗ ✓ ✓Device ID OK? ✗ ✗ ✓ - - ✓

Accessible Cloud APIs? - ✗ ✓ ✓ ✓ ✓

Device protocol

published?✓ ✗ ✓ - - ✓

Donate and repurpose

data?✓ ✗ ✓ ✗ ✓ ✓

Patient owns health data? ✓ ✓ ✓ ✗ ✓ ✓

#WeAreNotWaiting

Ben West

Let’s chat with an insulin pump

Meet Dario, the Personalized Smart Meter

#DIYPS  |  @DanaMLewis  &  @ScottLeibrand

• Real-­‐time  processing  of  BG,  insulin  on  board,  carbohydrate  decay  !

• Customizable  alerts  based  on  CGM  Data  +  trends  !

• Real-­‐time  predictive  alerts  for  FUTURE  high/low  BGs  (hours  in  advance)  !

• Continually  updated  recommendations  for  insulin  (bolus  or  temp  basal)  +  carbs

IN A BOLD NEW WAY

Galileo Cosmos™

EXPLORE YOUR DATA

Apps Hardware DoctorsEducation

INTEGRATED DIABETES HEALTHCARE

Nightscout

cloud

Watch Web  browser  “app”

CGM Remote monitoring for people wearing CGM:

CGM + USB Cable + Android + Database + Cloud Server + App running on Glanceable Display = Safety and Peace of Mind

• Ben West - Let’s chat with an insulin pump

• Dario, LabStyle Innovations - Oren Fuerst, David Edelman

• #DIYPS - Dana Lewis, Scott Leibrandt

• Gallileo Analytics - Anna McCollister-Slipp

• Joslin HypoMap™ powered by Glooko™ - Rick Altinger, Howard Wolpert

• mySugr - Kyle Rose, Frank Westermann

• Tidepool - Blip, Sonar, Nutshell, Sonar, Tidepool Platform

• Nightscout - Lane Desborough, Jason Calabrese, Ross Naylor