1. CysticLife.org Social Media and the Cystic Fibrosis Community

2. 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

3. Social Media

4. Popular Social Sites

5. 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

6. Demographics of Users

7. Explosive Growth

8. Frequency

9. 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.

10. Healthcare and Social Media

11. 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

12. 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

13. 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.

14. 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

15. Social Media and CF

16. 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

17. 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.

18. CysticLife

19. 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

20. 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

21. Questions?

22. Sources Webster, Tom. The Social Habit - Frequent Social Networkers The Edison/Arbitron Internet and Multimedia Study 2010. Rep. Edison Research/Arbitron Inc, Feb. 2010. Web. Aug. 2010.. Webster, Tom. The Social Habit - Frequent Social Networkers The Edison/Arbitron Internet and Multimedia Study 2010. Rep. Edison Research/Arbitron Inc, Feb. 2010. Web. Aug. 2010.. Chen, Pauline W. "Taking Time for Empathy." New York Times. 25 Sept. 2008. Web. 30 Aug. 2010.. Chen, Pauline W. "Taking Time for Empathy." New York Times. 25 Sept. 2008. Web. 30 Aug. 2010.. Meis, Scott. "Healthcare & Social Media: 2009 Trends & Strategy." Carolyn Grisko & Associates Inc., 11 Mar. 2009. Web. 30 Aug. 2010.. Meis, Scott. "Healthcare & Social Media: 2009 Trends & Strategy." Carolyn Grisko & Associates Inc., 11 Mar. 2009. Web. 30 Aug. 2010.. Q1 Productions. "Social Media in Healthcare." Apr. 2009. Web. 30 Aug. 2010.. Q1 Productions. "Social Media in Healthcare." Apr. 2009. Web. 30 Aug. 2010..