Information and sharing: Online tools and social media tactics - Hands-on use of websites, forums, Facebook, Twitter, videos, slide sharing, virtual spaces for advocacy SmartStart 2015, Frankfurt Jan Geissler Co-founder, CML Advocates Network, http://www.cmladvocates.net Chair, LeukaNET e.V.

1. Information and sharing:
Online tools and
social media tactics
Hands-on use of websites, forums, Facebook,
Twitter, videos, slide sharing, virtual spaces for advocacy
SmartStart 2015, Frankfurt
Jan Geissler
Co-founder, CML Advocates Network, http://www.cmladvocates.net
Chair, LeukaNET e.V.

2. What is so "social"
about "social media"?
 "User Generated
Content" has turned
patient-driven media
upside down
• Blogs
• Wikis, Wikipedia
• Flickr, YouTube
• Twitter
• Facebook
• Skype
 Most services are free

3. Are my patients on the Internet?
What about Internet literacy?
 Almost every patient has access to
Internet-based information today
 Young relatives are often key in
informing elderly patients
 Age is no longer a challenge in Internet
use, but educational level, language
and ethnic minorities
 Benchmark:
How many printed brochures do you get
to your constituency? Have you ever
assessed effectiveness of “print”?

4. Social media use by patient groups
in practice
 Reach out & campaign
• reach out to patients, policymakers &
media
• mobilize activists
 Share
• provide information & support
• connect advocates
 Collaborate, and do research
• Link up with experts
• conduct surveys, understand needs,
collect data

5. Case studies

6. Leukaemie-Online.de
2002-2015
 Users contributing content
 More than 1.100 blog-style
articles about research
 Old-style, anonymous
forum with >20.000 forum
messages
 Community-generated
glossary
 Facebook-like private area
with ad-hoc groups
 Twitter integration

7. CML Advocates Network
& Social Media use
Global platform for leukemia patient
group leaders, founded in 2007.
102 groups from 78 countries today.
Old-style discussion forums
Facebook integration
(like buttons)
Twitter integration (feed on
website)
Member-only Wiki
Community-run photo gallery
Use of Google Docs

8. (Old-style) Discussion Forum
 Well-established "social media"
 Support patients supporting patients
 Most efficient "one to many"
communication:
1% contribute, 99% only read…
(never achieved with mailing
lists and newsletters)
 The challenge of moderation

9. E-Mail mailing lists vs. online
forums: Pros and Cons
E-Mail Mailinglists
• "Reflector type"
• Emails to subscribers
• Reach out (only) to
those you know
Forums
• Public website
discussion
• Wide outreach - also to
those you don't know

10. Wikipedia
 One of the largest knowledge bases
of the world
 "Wisdom of the crowd":
Everyone can edit and
contribute,
100.000s people do
 There is always someone
that will add something
to what you start
 Just click on "edit"

11. Twitter
 "Microblogging" – something
like an SMS stream, using
140 characters or less
 Follow people that provide
interesting news
 Reach out to people that
don't know you (yet)
 Follow topics ("hashtags"),
e.g. #eupati – somebody's
always tweeting!
 Use Hootsuite (free)
to monitor & serve multiple
channels

12. Twitter Case Study
 On 16 Oct 2009, set a new Guinness World
Record for the largest social mass media
message distributed in a 24 hour period
 Ebay and MillerCoors Brewing Co. committed
to donate a penny ($0.01) for every
Twitter/Facebook/blog with #BeatCancer.
 Mentioned #BeatCancer in messages
>600.000 times with the help of bloggers,
Twitterers and Facebook friends
 4 cancer organizations have earned over
$70,000.
Source: http://beatcancereverywhere.com/

13. Facebook –
increasing importance
in patient advocacy

14. World CML Day (9/22):
Use of YouTube
 „World CML Day
Channel“ hosted on
YouTube
 Photos submitted
by form via email
 YouTube upload
 Zero costs
for us (except time
for approvals)

15. World CML Day (9/22):
Use of Flickr
 World CML Day &
„Faces of CML Day“
 Collected
via cmladvocates
 Automatically
sent by email
to Flickr
 Embedded on
cmladvocates

16. Use of Google Docs
to host / update
spreadsheet of generics
CML Generics Registry:
Use of Google Docs

17.  Upload of PPT
slides and
embedding
them on the
website takes
~10 minutes
 Even free
webinars
are possible if
audio is
recorded as MP3
Using SlideShare and
authorSTREAM for
Slides & Webinars

18. Ad-hoc working groups:
Wiggio.com
It takes only 5 minutes to set up a free “virtual workspace”
E-Mail mailing list reflector (e.g. xyz@wiggiomail.com)
Shared file space
Shared calendar

19. Does it require a large
team? Not really.
CML Advocates Network:
Jan, volunteer
Nicole, part-time
paid advocate
A small IT company
that provides ad-hoc support
The community who reads,
listens, shares and re-tweets

20. Key learnings
 Running a website is key, but Social Media
brings “eyeballs” to your website.
 Go where your audience is – and serve them
 Age is no longer the challenge, but
educational level and ethnic minorities
 Use services like Flickr, Facebook, Twitter,
YouTube, SlideShare, authorSTREAM at
“close to zero” cost
 Do not just start what you are able to start,
but get going on what you’re able to
maintain.

21. Thank you!
Jan Geissler
 jan@cmladvocates.net
 Twitter @jangeissler
 http://www.cmladvocates.net