"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
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Social media use in patient advocacy - some practical examples from the CML Advocates Network
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
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