Joyce Lee, MD, MPH, Doctor as Designer: Social Media as a Tool for Patient-centered Outcomes Research
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My talk for the Brown University Emergency Medicine Digital Health Innovation Group
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Joyce Lee, MD, MPH, Doctor as Designer: Social Media as a Tool for Patient-centered Outcomes Research
- 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???
- 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
- 53. Patient as maker
- 64. Studies • Descriptive Survey • Undergraduate Programmers (Apps) • Ethnography – Health communities/Makers • Facebook Mining – Reliability of Health Information • Open Science Mobile Health Projects
- 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