My talk at the DIY Diabetes Symposium at ADA 2018

1. DIY Diabetes:
Lessons for Healthcare
Joyce Lee, MD, MPH
Robert Kelch Professor of Pediatrics
University of Michigan
http://www.doctorasdesigner.com/
@joyclee

2. Disclosures
None
@joyclee

3. @joyclee

4. What have we learned from
the Nightscout Project?
@joyclee

5. @joyclee

6. Lesson #1: Individuals with Diabetes and their Caregivers
have expertise and increasing autonomy
@joyclee

7. #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
@joyclee

8. While using OpenAPS, self-
reported median HbA1c dropped
from 7.1% to 6.2%, and median
percent time in range (80-180
mg/dL) increased from 58% to 81%
Nightscout Open APS
@joyclee

9. “All but one respondent reported
some improvement in sleep
quality, and 56% reported a large
improvement. Users were
extremely satisfied with the “life-
changing” improvements
associated with using an APS."
Nightscout Open APS
@joyclee

10. Lesson #2:
We cannot ignore and/or underestimate the importance
of social media for supporting and creating health @joyclee

11. 21. France
22. Netherlands
23. New Zealand
24. Mexico
25. Croatia
26. South Africa
27. Israel
28. Japan
29. Switzerland
30. Hungary
31. Belarus
29,000+
Int’l
11. Australia
12. Portugal
13. Denmark
14. Germany/Austria
15. Turkey
16. Russia
17. Romania
18. Korea
19. Ireland
20. Brasil
55,000+
worldwide
@joyclee
1. Italy
2. UK
3. Spain
4. Sweden
5. Bulgaria
6. Norway
7. Poland
8. Czech+Slovakia
9. Canada
10. Finland

12. @joyclee

13. @joyclee

14. 26,000
4700
Online community or
Healthcare delivery system?
4100
@joyclee

15. @joyclee
Lesson #3: We must learn from the community about large-scale
health production created through human cooperation and
collaboration

16. Leadership Team Support Team Core Development Team
@joyclee

17. A code “repository” where programmers
store their files for a project
Platform that supports collaboration
Social Network
@joyclee

18. Owner(s)
Write code &
publish on Github
“Master” code is
“forked” and
downloaded
Uses the code as-is
Edits/modifies code
to improve it or add
features
Suggests a
change
Approves change &
“commits” to
master
User Contributor
@joyclee

19. Nightscout
NS
OpenAPS
Loopkit
@joyclee

20. @joyclee

21. Open Source Software/Hardware
Anyone can access and modify the code
There is transparency about who is editing the code
Goal is to create “high quality programs" and to "work cooperatively
with other similarly minded people" to improve open-source
technology
@joyclee

22. Forks (Users) Contributors Commits
NS 17,068 93 4505
xDrip 165 5 219
openAPS 236 69 2962
Loopkit 311 22 996
@joyclee

23. What were the consequences for innovation?
A greater number of products that fully meet user needs
Acceleration in the Pace of Innovation
Decreased Cost of Innovation
@joyclee

24. How do you get your CGM in the Cloud?
@joyclee

25. What were the consequences for innovation?
A greater number of products that fully meet user needs
Acceleration in the Pace of Innovation
Decreased Cost of Innovation
@joyclee

26. Nightscout
Nightscout Innovations
@joyclee

27. • Remote BG access
on laptop & mobile
• More portable rig
• Access on Pebble
watch
• Treatment
recommendations
• Move to Open Source
• Alerts for “stale” data
& errors
• Option to use in mmol
• CarePortal data
pushed to mobile
• “Cone of Confidence”
BG prediction
• Calibration BG display
• Custom BG alerts
• BG delta display
• “Hover” view for
CarePortal
• Option to use
Medtronic sensor
• Raw data display
• IOB & signal quality
indicators
• Predictive alerts
• Temp. basal display
& suggestions
• openAPS integration
• Bolus calculator
• Insulin & sensor age
UI displays
• Daily stats
• Alexa integration
• Improved loading
• Less data usage
• Improved AP
visualizations
• Back-end
improvements
Nightscout
Nightscout Innovations
@joyclee

28. • DexDrip transmits
directly from sensor
to mobile phone
• Raw data display
• Eliminates Dexcom
receiver & cables
• Direct uploading
from Share
• Homescreen
widgets
• Improved Bluetooth
connection
• Custom alerts &
snoozes
• Stats & reports
• Backend
improvements
• Raw data available
on Smartwatch
• Integration with G5
• Improved signal
stability
• Delete alarms
Xdrip Innovations
Nightscout Xdrip
@joyclee

29. • Treatment
recommendations based
on pump & CGM data
• Pushes to Pebble watch
• Nightscout integration
• Loop is closed
• Advanced meal assist
• Auto-Sensitivity feature
openAPS Innovations
Nightscout openAPSXdrip
@joyclee

30. 10
16 19
24
28
38
54
61
0
10
20
30
40
50
60
70
NS has incorporated ~ 51 new features beyond just “remote monitoring” and is on
its 8th major software rollout
Dexcom incorporated ~13 novel features and 5 new platform rollouts in that time
span
New features

31. DIY vs. Commercial
Innovation Timeline

32. What were the consequences for innovation?
A greater number of products that fully meet user needs
Acceleration in the Pace of Innovation
Decreased Cost of Innovation
@joyclee

33. Forks (Users) Contributors Commits
NS 17,068 93 4505
xDrip 165 5 219
openAPS 236 69 2962
Loopkit 311 22 996
@joyclee

34. Lead User Innovation (Eric von Hippel)
Lead users are individuals or organizations who have experienced needs for a
given innovation earlier than the majority of the target market
@joyclee

35. Stage 1 Stage 2 Stage 3
Lead User Innovation Process
Product
Innovation
Lead users develop
their own product
innovations
Lead users are part of
communities where
they learn, share, and
borrow from
contributions of others
Lead users test their
product innovations
on a small scale
Enterprise Product
Development
More Products Sold
More Revenue
Greater Inventiveness of Product
@joyclee

36. Open Innovation
@joyclee

37. How do we support lead user/open innovation in
other arenas of diabetes?
@joyclee

38. Clinical Innovation
@joyclee

39. Platform = OpenHumans.org
Open Science
Projects or “IRB-covered Research Projects”
Participants decide with whom to share their data
De-identified data, but capacity for messaging participants
Governance
Data is “owned” by the community
Academic researchers are a beneficiary of data donation
Community Partners and the NS Foundation to drive
communications and engagement
https://www.openhumans.org/activity/nightscout-data-commons/
Research Innovation
@joyclee

40. Aim: To compare percentage time in range for individuals glycemic
control in patients with type 1 diabetes who follow a very low
carbohydrate diet (≤30 g/day) compared with a higher carbohydrate diet
or low carbohydrate diet (30 – 130 g/day) and normal compared to those
who follow no low carbohydrate diet (> 130 g/day).
Complete survey, 24-hour dietary recall tool
Submit CGM, Pump, Meter data
@joyclee

41. @joyclee

42. Lesson #1: Individuals with Diabetes and their Caregivers have
expertise and increasing autonomy
Lesson #2: We cannot ignore and/or underestimate the
importance of social media for supporting and creating health
Lesson #3: We must learn from the community about large-
scale health production created through human cooperation
and collaboration
What can we learn from Nightscout?
@joyclee

43. @joyclee

44. Emily Borst, MS, conducted the innovation research
CGM in the Cloud Community, Etiowo Usoro, Ben West, Dana Lewis, John Costik,
James Wedding, Weston Nordgren, Ken Stack, Emily Hirschfeld, Ashley Garrity, Jacob
Dwyer, Sarah Clark, Mark Newman, Nancy Benovich Gilby, Liz Kaziunas, Sylvia Lindtner,
George Albercook, PCORI
It takes a Virtual Village
doctorasdesigner.com
@joyclee
medium.com/@joyclee

45. Nightscout openAPSXdrip
Nightscout Xdrip openAPS Innovations
@joyclee