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Exploring Social Media's Impact on the Cystic Fibrosis Community

This article delves into the dynamic role of social media within the cystic fibrosis (CF) community. We will analyze the state of social networking, the increasing engagement of e-patients, and the benefits of online platforms for connecting those affected by CF. With significant year-over-year growth in social media usage, especially among younger demographics, we investigate how users share experiences, seek support, and access health information. CysticLife.org stands out as a pivotal platform that fosters community, education, and advocacy for patients, families, and healthcare providers.

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Exploring Social Media's Impact on the Cystic Fibrosis Community

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

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

  3. Social Media

  4. Popular Social Sites

  5. The State of Social Media • Explosive year-to-year growth • Usage increases year-to-year • 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.

  10. Healthcare and Social Media

  11. Popular Types of Healthcare Social Media • Blogs – WebMD, NYTHealth Blog • Microblogs – Livestrong • Social Networking – OrganizedWisdom, PatientsLikeMe • Podcasts – Johns Hopkins Medical Podcasts, Mayo Clinic • 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. • 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

  13. Why Social Media? • People trust “a person like me” more than authority figures • People are seeking ongoing dialogue, not one-way communication • 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. • 34% using social media sites • 46% using health sites • 67% using search engines

  15. Social Media and CF

  16. CF Community Online • Trends are the same for the CF community • Added benefits for CF community: • Limited face-to-face interaction for patients • Small population, web increases circle of support • 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 • Social Networks – CysticLife.org, Facebook • Podcasts – Jerry Cahill’s CF Podcast • 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. • Online: CysticLife.org • Offline: • Raise awareness about CF • Educate/support the community • 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 • 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: • Over 900,000 hits • 2100 registered members • Average 8.5 minutes and 8.5 pageviews per visit • Visitors from all 50 states and 79 different countries • 64% of visitors returning more than once a day • Top Content: • 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. <http://www.edisonresearch.com/home/archives/2010/06/the_social_habit_frequent_social_networkers_in_america.php>. • Chen, Pauline W. "Taking Time for Empathy." New York Times. 25 Sept. 2008. Web. 30 Aug. 2010. <http://www.nytimes.com/2008/09/26/health/chen25.html?em>. • Meis, Scott. "Healthcare & Social Media: 2009 Trends & Strategy." Carolyn Grisko & Associates Inc., 11 Mar. 2009. Web. 30 Aug. 2010. <http://www.slideshare.net/ScottMeis/healthcare-social-media-2009-trends-strategy-1131605>. • Q1 Productions. "Social Media in Healthcare." Apr. 2009. Web. 30 Aug. 2010. < http://www.youtube.com/watch?v=qLeNGykRAvU>.

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