Social Media: A Useful Tool for Patient-centered Outcomes Research?
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Joyce Lee, MD, MPH, Doctor as Designer University of Michigan
Twitter: @joyclee
Social Media: A Useful Tool for Patient-centered
Outcomes Research?
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Co-director-Mott Mobile
Technology for Enhancing Health
Social Media Editor, JAMA Pediatrics
Healthdesignby.us
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@joyclee
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75% of children fail to achieve
recommended blood sugar goals in Type 1 Diabetes
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Who is at fault? The patient or the design?
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Which cord? PC desktop? No cloud connectivity?
Really?
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#waiting
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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
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Healthcare: “Fax us your numbers!” Kid: “Mom, what’s a fax? Is it compatible with Snapchat?”
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What is his BS???
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#mhealth to the rescue!
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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
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Hacking Commands
Getting the data I wanted Byte Array decoding
What does 161718191A1B1C1D1E1F mean?
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“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”
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“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!”
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“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.”
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10,724 members
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Patient as
expert maker
collaborator #thefutureofdiabetestechnology
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Patient as
expert http://bit.ly/10IUyph
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Patient as
maker
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Patient as
collaborator
http://bit.ly/1qyPESH
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John Costik
Adrien de Croy
Weston Nordgren II
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Studies
• Descriptive Survey • Undergraduate Programmers (Apps) • Ethnography – Health communities/Makers
• Facebook Mining – Reliability of Health Information
• Open Science Mobile Health Projects
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MD to Patient Passive Solitary Closed
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Patient to Patient Active
Collaborative Open
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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