CysticLife.org Social Media and the Cystic Fibrosis Community

Today’s Objectives Understand the state of social media Understand the state of social media Discuss social networking for the healthcare industry Discuss social networking for the healthcare industry Learn how the Cystic Fibrosis community is using social media Learn how the Cystic Fibrosis community is using social media Explore CysticLife.org Explore CysticLife.org

Social Media

Popular Social Sites

The State of Social Media Explosive year-to-year growth Explosive year-to-year growth Usage increases year-to-year Usage increases year-to-year Social networker make-up leans towards young females Social networker make-up leans towards young females

Demographics of Users

Explosive Growth

Frequency

Key Implication With both usage of social networks and the frequency of that usage increasing dramatically – We are witnessing a change in how mainstream consumers communicate. With both usage of social networks and the frequency of that usage increasing dramatically – We are witnessing a change in how mainstream consumers communicate.

Healthcare and Social Media

Popular Types of Healthcare Social Media Blogs – WebMD, NYTHealth Blog Blogs – WebMD, NYTHealth Blog Microblogs – Livestrong Microblogs – Livestrong Social Networking – OrganizedWisdom, PatientsLikeMe Social Networking – OrganizedWisdom, PatientsLikeMe Podcasts – Johns Hopkins Medical Podcasts, Mayo Clinic Podcasts – Johns Hopkins Medical Podcasts, Mayo Clinic Forums – Google Health Groups, Yahoo! Health Groups Forums – Google Health Groups, Yahoo! Health Groups

Healthcare Social Media E-patients represent the new breed of informed health consumers - using the internet to gather medical information about a condition of particular interest to them. E-patients represent the new breed of informed health consumers - using the internet to gather medical information about a condition of particular interest to them. 60 million consumers are using new media to interact and share their health experiences online. 60 million consumers are using new media to interact and share their health experiences online. 72 % of e-patients searched for medical information just before or after a doctor’s visit 72 % of e-patients searched for medical information just before or after a doctor’s visit

Why Social Media? People trust “a person like me” more than authority figures People trust “a person like me” more than authority figures People are seeking ongoing dialogue, not one- way communication People are seeking ongoing dialogue, not one- way communication Many patients are not getting the empathy they need from doctors. Many patients are not getting the empathy they need from doctors.

What are e-patients searching for and how? 36% want to see what other consumers say about medication or treatment. 36% want to see what other consumers say about medication or treatment. 34% using social media sites 34% using social media sites 46% using health sites 46% using health sites 67% using search engines 67% using search engines

Social Media and CF

CF Community Online Trends are the same for the CF community Trends are the same for the CF community Added benefits for CF community: Added benefits for CF community: Limited face-to-face interaction for patients Limited face-to-face interaction for patients Small population, web increases circle of support Small population, web increases circle of support CF is a lifestyle disease CF is a lifestyle disease

Popular CF Social Media Blogs – Confessions of a CF Husband, CFFatboy, RunSickboyRun, A Matter of Life and Breath, Welcome to Joshland Blogs – Confessions of a CF Husband, CFFatboy, RunSickboyRun, A Matter of Life and Breath, Welcome to Joshland Social Networks – CysticLife.org, Facebook Social Networks – CysticLife.org, Facebook Podcasts – Jerry Cahill’s CF Podcast Podcasts – Jerry Cahill’s CF Podcast Forums – Yahoo! and Google Health Groups. Forums – Yahoo! and Google Health Groups.

CysticLife

What is CysticLife? An organization that works to positively impact the lives of the Cystic Fibrosis community. An organization that works to positively impact the lives of the Cystic Fibrosis community. Online: CysticLife.org Online: CysticLife.org Offline: Offline: Raise awareness about CF Raise awareness about CF Educate/support the community Educate/support the community Soon will provide activity, medical, and educational grants for CF-related expenses Soon will provide activity, medical, and educational grants for CF-related expenses

CysticLife.org Open to anyone in the CF community: patients, family members, friends and healthcare providers Open to anyone in the CF community: patients, family members, friends and healthcare providers Members can maintain a profile, blog, ask questions, communicate with others and search for members by age, gender, location and relation to CF. Members can maintain a profile, blog, ask questions, communicate with others and search for members by age, gender, location and relation to CF. Since January 2010: Since January 2010: Over 900,000 hits Over 900,000 hits 2100 registered members 2100 registered members Average 8.5 minutes and 8.5 pageviews per visit Average 8.5 minutes and 8.5 pageviews per visit Visitors from all 50 states and 79 different countries Visitors from all 50 states and 79 different countries 64% of visitors returning more than once a day 64% of visitors returning more than once a day Top Content: Top Content: Questions, Blogs, Members Questions, Blogs, Members Live Demo

Questions?

Sources Webster, Tom. The Social Habit - Frequent Social Networkers The Edison/Arbitron Internet and Multimedia Study Rep. Edison Research/Arbitron Inc, Feb Web. Aug Webster, Tom. The Social Habit - Frequent Social Networkers The Edison/Arbitron Internet and Multimedia Study Rep. Edison Research/Arbitron Inc, Feb Web. Aug Chen, Pauline W. "Taking Time for Empathy." New York Times. 25 Sept Web. 30 Aug Chen, Pauline W. "Taking Time for Empathy." New York Times. 25 Sept Web. 30 Aug Meis, Scott. "Healthcare & Social Media: 2009 Trends & Strategy." Carolyn Grisko & Associates Inc., 11 Mar Web. 30 Aug Meis, Scott. "Healthcare & Social Media: 2009 Trends & Strategy." Carolyn Grisko & Associates Inc., 11 Mar Web. 30 Aug Q1 Productions. "Social Media in Healthcare." Apr Web. 30 Aug Q1 Productions. "Social Media in Healthcare." Apr Web. 30 Aug