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CysticLife.org
Social Media and the Cystic Fibrosis Community
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
Social Media
Popular Social Sites
The State of Social Media
Explosive year-to-year growth
Usage increases year-to-year
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.
Healthcare and Social Media
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
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
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.
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
Social Media and CF
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
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.
CysticLife
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
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
Questions?
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>.