Social Media: A Useful Tool for Patient-centered Outcomes Research?

Post on 16-Jul-2015

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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?

Co-director-Mott Mobile

Technology for Enhancing Health

Social Media Editor, JAMA Pediatrics

Healthdesignby.us

@joyclee

75% of children fail to achieve

recommended blood sugar goals in Type 1 Diabetes

Who is at fault? The patient or the design?

Which cord? PC desktop? No cloud connectivity?

Really?

#waiting

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

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

What is his BS???

#mhealth to the rescue!

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

Hacking Commands

Getting the data I wanted Byte Array decoding

What does 161718191A1B1C1D1E1F mean?

“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”

“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!”

“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.”

10,724 members

Patient as

expert maker

collaborator #thefutureofdiabetestechnology

Patient as

expert http://bit.ly/10IUyph

Patient as

maker

Patient as

collaborator

http://bit.ly/1qyPESH

John Costik

Adrien de Croy

Weston Nordgren II

Studies

•  Descriptive Survey •  Undergraduate Programmers (Apps) •  Ethnography – Health communities/Makers

•  Facebook Mining – Reliability of Health Information

•  Open Science Mobile Health Projects

MD to Patient Passive Solitary Closed

Patient to Patient Active

Collaborative Open

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