Presentation for the Board of Directors of the National Marfan Foundation introducing the importance of social media in the overall communications strategy.

1. Web 2.0
Making the Connection

2. Whattayatalkinabout?
 Define Web 2.0
 Examples
 Benefits
 Implications
 Next Steps

3. 39 million adults say they
turn to the Internet first
for answers to their
health questions
Wow!
--Manhattan Research Healthcare Marketing Firm

4. Recent Study:
The Future of the Internet in Health Care
 Future trends:
 Consumer Health Information Services
 Online Support Groups for Patients and Caregivers
 Health Care Provider Information Services
The Future of the Internet in Health Care: A Five-Year Forecast
Mary Cain and Robert Mittman This summary appears in the report The Future of the Internet: A
Five-Year Forecast, written for the California HealthCare Foundation.
The full report can be found on the Foundation web site at: http://www.chcf.org/documents/intreport.pdf

5. More, Gimme MORE!
 Internet Before
 Information source
 Internet Today
 Information source
 Support system
 Community builder
 Advocacy tool
 More…
People are looking to the internet
to satisfy more of their needs

6. Today, NMF Website Offers
 Consumer Health Info
 Healthcare Provider Info
 “Ask a Question”
 Contact info for Chapters, Support Groups,
Network Groups, and Telephone Contacts
 Opportunities to Donate, Join, Volunteer

7. Web 2.0
The Next Generation
Making the Connection

8. What is Web 2.0, anyway?
 Web 2.0 refers to a perceived second
generation of web-based services that
emphasize online collaboration and sharing
among users.
-- O’Reilly Media, 2004

9. What is Web 2.0, anyway?
 It IS NOT a type of software or hardware
 It is a concept of how new network and
service sites are being used by people to
make connections and share information

10. Huh?
 Social Networking
 Facilitated online connections based on shared
interests
 MySpace
 Friendster
 Facebook

11. Huh?
 Blogs
 Chronological online diary
 Blogger
 LiveJournal

12. Huh?
 Wikis
 A website or similar online resource which allows
users to add and edit content collectively. “Wiki
wiki” means "rapidly" in the Hawaiian language.
 Wikipedia
 Marfan Wiki

13. Huh?
 File Sharing
 Central Online location where people can share
files
 YouTube (video)
 Flickr (photos)
 Del.icio.us (social bookmarking)

14. Huh?
 Bulletin Boards
 Online information resources where individuals
may post information that is of interest to others.
Virtual communities often form around bulletin
board systems (BBS). Although bulletin boards
existed on systems that preceded the World
Wide Web, most are now Web-based.

15. Huh?
 Chat
 A virtual room where people can communicate in
real time while on the Internet
 AOL
 MSN

16. What’s in it for us?
 Web 2.0 connects
 Us to our posse
 Our peeps to each other
 Other people to us

17. In other words…
 Web 2.0 offers opportunities to
 Educate our members
 Facilitate peer connections
 Bring the public to us

18. Our vision of Web 2.0 for the NMF
 Create a “Teen Space”
 Online support groups
 Bulletin Boards
 Chat
 Ask a doctor
 Staff/Board blogs
 Join social networks to boost traffic to NMF site
 Advocacy page linking NMF members to their representatives
 Increased use of web for event registration
 Podcasts
 The options are endless…

19. But is it in our Strategic Plan???
 Absolutely!
 1 - Early and correct diagnosis
 2 - Proper treatment
 4 - Increase size and scope of research
 5 - Improve non-medical services
 6 - Stronger advocacy to government
 8 - NMF is preeminent information source
 10 - 50 State Network
 15 - Effective technology

20. I like it. Are we ready?
 Yes
 Redesigned website
 Information and services
to share
 People to share it with
 Vision
 No
 Website upgrade
needed
 Functionality
 Navigation
 Moolah!

21. Let’s do it! Now what?
Not so fast!
We need to:
 Ensure we are ready to make the ongoing
commitment for consistent and timely updates
 Create participation guidelines and policies
 Determine how it will be moderated