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Applications of Social Media for Research

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Joyce Lee
Joyce Lee

My talk at the 2015 American Diabetes Association meeting!

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Applications of Social Media for Research and Health Promotion Joyce Lee, MD, MPH Doctor as Designer Twitter: @joyclee
JAMA Pediatrics Social Media Editor
Agenda •  Social Media Statistics •  Users/Features •  Opportunities/Challenges
Agenda •  Social Media Statistics •  Users/Features •  Opportunities/Challenges
Q: Are there any other uses of social media in clinical medicine or research that you want to learn about? A: “No. This is a complete waste of time. This is not real research. The fad will die out soon.”
% of US Adults who use Social Media (2012-2014) Pew Research
Agenda •  Social Media Statistics •  Users/Features •  Opportunities/Challenges
“Teens are leaving Facebook in droves for new friends like Instagram, Snapchat and Twitter - at an estimated rate of up to a million a year…It’s hard to look cool when you’re hanging out with Mom and Dad.”
Intimacy Less Social Pressure “Privacy” Fast and visual Exclusively Mobile Snapchat
Yikyak
Campaigns
http://foodborne.smartchicagoapps.org/
Measurement
Articleurl&utm_campaign=social_42414&utm_me dium=email&utm_source=healthdesignbyus Articleurl&utm_campaign=social_42414&utm_me dium=twitter&utm_source=@healthbyus Articleurl&utm_campaign=social_42414&utm_me dium=facebook&utm_source=healthdesignbyus Google Analytics
Recruitment
Facebook Targeting by: •  Age (18-25) •  Location (United States or California) •  Language (English) •  Tobacco- and/or marijuana-related keywords that appeared in their Facebook profiles
Intervention
Rare Disease Research
Only pt with NGLY-1 #umichmed
#umichmed
16 cases worldwide Parent advocacy/fundraising Treatments Clinical Trials #umichmed
#umichmed
Patient survey about protein losing enteropathy (PLE) and plastic bronchitis (PB) •  Hosted on website & Facebook page •  Posted on 2 existing, patient-run Facebook pages •  Request for survey results ->asked to refer other individuals •  Google ads
Challenges
Limitations •  No available detailed clinical data (i.e. hemodynamic data in CHD) •  Disease verification •  Bias of online communities •  Privacy (social media is not secure)
Social Media Research in Diabetes
Studies •  Descriptive Survey •  Ethnography – Health communities/Makers •  Facebook Mining – Reliability of Health Information •  Patient powered research network?
Take the survey! www.nightscoutstudy.info
http://nightscoutstudy.info/ http://twittersuperuser.com/

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