My talk for the Brown University Emergency Medicine Digital Health Innovation Group

1. Joyce Lee, MD, MPH, Doctor as Designer
University of Michigan
Twitter: @joyclee
Social Media: A Useful
Tool for Patient-centered
Outcomes Research?

2. Co-director-Mott Mobile
Technology for Enhancing Health
Social Media Editor, JAMA
Pediatrics
Healthdesignby.us

3. @joyclee

4. 75%
of children fail to achieve
recommended blood sugar
goals in Type 1 Diabetes

5. Who is at fault?
The patient or the design?

9. Which cord? PC desktop?
No cloud connectivity?
Really?

10. #waiting

11. Some people wonder why almost
no one uploads their pump data…
I think I know why: because
getting it to work can be like
CRAWLING. THROUGH.
BROKEN. GLASS.
@HowardLook

15. Healthcare: “Fax us your numbers!”
Kid: “Mom, what’s a fax? Is it
compatible with Snapchat?”

18. What is his BS???

19. #mhealth
to the rescue!

21. Hard to find
Too many
Uncertain Quality
Uncertain Benefit
Lack of link to provider
Lack information on security/data
Too much burden
The promise of mobile health has
yet to be realized

26. Hacking
Commands
Getting the data I wanted
Byte Array decoding
What does
161718191A1B1C1D1E1F mean?

28. “This led up to an email from the
wonderful Lane Desborough. We got
talking, I shared my simple Windows
uploader with him, and he began
working on “Nightscout” – a glance-
able BG chart that could be viewed
throughout a home”

32. “We continued to work on our apps
and tools, more folks on twitter began
to notice – and it became very clear
that people really wanted this tool. It
was life changing for us, and other
parent’s immediately saw the value,
the hope for a less complex, safer,
healthier life it can bring.”
“Freedom!”

33. “The “CGM in the Cloud” Facebook
group started from these early twitter
interactions and helping just a few
other d-parents looking for a better
way. We have wonderful tools, but
they can do more! JC, JA, & TC
deserve the credit for scaling this
system. JA started the group, because
he knew that we were not the only
ones tired of waiting.”

43. 10,724 members

51. Patient as
expert
maker
collaborator
#thefutureofdiabetestechnology

52. Patient as
expert
http://bit.ly/10IUyph

53. Patient as
maker

54. Patient as
collaborator
http://bit.ly/1qyPESH

55. John
Costik
Adrien de
Croy
Weston
Nordgren II

64. Studies
• Descriptive Survey
• Undergraduate Programmers (Apps)
• Ethnography
– Health communities/Makers
• Facebook Mining
– Reliability of Health Information
• Open Science Mobile Health Projects

65. MD to Patient
Passive
Solitary
Closed

66. Patient to Patient
Active
Collaborative
Open

67. THANK YOU
John Costik, Adrien de Croy
Weston Nordgren II
Nancy Benovich Gilby, Peter Honeyman, Liz
Kaziunas, Sylvia Lindtner, Mark Ackerman,
The Nightscout/#doc community
Twitter: @NightscoutProj
FB: CGM in the Cloud
#wearenotwaiting