Social Media inClinical Trial Recruitment John Sharp 10/28/2011
The Big 3 – Twitter, Facebook,YouTube Pervasive Patients follow organizations, academic medical centers – interested in discoveries FDA watching Pharma’s use of social media Always link back to more information and a contact person
Engagement with online patientcommunities Patients discussing the latest treatments, trials Rare diseases particularly effective – NORD More common diseases – DiabetesMine.com – thousands of visitors daily Breast cancer communities active ALS, MS – PatientsLikeme.com Peer-to-peer healthcare Mayo Clinic – rare cardiac disease community eager to engage
More recruits that you canaccommodate News travels quickly via Twitter, Facebook Army of Women – with Susan Love 12 studies and 12,000 signed up in 2009 alone Breast cancer, lung cancer, obesity studies
What does the Institutional ReviewBoard think? Yet to be approved How is this different from traditional advertising for clinical trials? Need social media experts on the IRB Need to begin to define best practices What are adverse events in online research, what should be reported?
References (1) National Organization for Rare Diseases (NORD) Facebook page: https://www.facebook.com/NationalOrganizationforRa reDisorders Online Patient communities: http://www.rarediseases.org/patients-and- families/online-communities PatientsLikeMe.com Clinical Trials Tool: http://www.patientslikeme.com/clinical_trials Engaging E-Patients in Clinical Trials through Social Media Blue Chip Marketing report: http://bluechipmarketingworldwide.com/BCPR_form/B lueChip_SocialMedia_5-2011.pdf Can Breaking Oncology News Spread Socially? From the blog, 33Charts: http://33charts.com/2010/10/can- breaking-oncology-news-spread-socially.html
References (2) E-Patient White Paper Chapter 6 – e-Patients as Medical Researchers http://e-patients.net/e-Patients_White_Paper.pdf Mind the Gap: Peer-to-peer Healthcare From Pew Internet & American Life Project http://www.pewinternet.org/Reports/2011/20-Mind-the- Gap.aspx Social Media Valuable Tool for Recruiting Study Participants Mayo Clinic Proceedings, 8/29/11 http://www.mayoclinic.org/news2011-rst/6420.html