"Social media use in patient advocacy - some practical examples from the CML Advocates Network", presented by Jan Geissler at the 2nd Rare Diseases and Solid Tumors Patient Organisations Digital Media Lab, Amsterdam 3-4 June 2014

1. Case study:
Social media use in
patient advocacy - some examples
from the CML Advocates Network
Jan Geissler
Co-founder, CML Advocates Network
Chair, LeukaNET e.V.
http://www.cmladvocates.net
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2. Leukaemie-Online.de 2002-2013
 Users contributing content
 More than 1100 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

3. CML Advocates Network:
A global network of CML groups
Global social platform for leukemia patient
groups, founded by four groups in 2007
Main objectives
 Provide public directory of CML groups
 Facilitate communication of CML advocates
 Build advocacy knowledge
Membership today
 89 CML patient organisations from
67 countries on all continents
http://cmladvocates.net/members
http://www.cmladvocates.net

4. Social Media use
on CML Advocates Network
 Old-style discussion forums
 Facebook integration
(like buttons)
 Twitter integration (feed on
website)
 Member-only Wiki
 Community-run photo gallery

5. 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

6. 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)

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

8.  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 authorSTREAM
for Slides & Webinars

9. Facebook –
increasing importance
for our advocacy work

10. Does it require a large
team? Not really.
 Jan, volunteer
 Nicole, part-time
paid advocate
 A small IT company
that provides ad-hoc support
 3 co-moderators of the online
forum (1-2 hours/week)
 The community who reads,
listens, shares and re-tweets

11. Key learnings
 Running a website is core, but Social Media is
the main driver having “eyeballs” there.
 Go where your audience is
– and serve them there
 Age is no longer a challenge in Internet use,
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.
 Make maximum re-use of what you have

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