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Case study:
Social media use in
patient advocacy - some examples
from the CML Advocates Network
Jan Geissler
Co-founder, C...
Leukaemie-Online.de 2002-2013
 Users contributing content
 More than 1100 blog-style
articles about research
 Old-style...
CML Advocates Network:
A global network of CML groups
Global social platform for leukemia patient
groups, founded by four ...
Social Media use
on CML Advocates Network
 Old-style discussion forums
 Facebook integration
(like buttons)
 Twitter in...
World CML Day (9/22):
Use of Flickr
 World CML Day &
„Faces of CML Day“
 Collected
via cmladvocates
 Automatically
sent...
World CML Day (9/22):
Use of YouTube
 „World CML Day
Channel“ hosted on
YouTube
 Photos submitted
by form via email
 Yo...
Use of Google Docs
to host / update
spreadsheet of generics
Inofficial CML Generics Registry:
Use of Google Docs
 Upload of PPT
slides and
embedding
them on the
website takes
~10 minutes
 Even free
webinars
are possible if
audio is
r...
Facebook –
increasing importance
for our advocacy work
Does it require a large
team? Not really.
 Jan, volunteer
 Nicole, part-time
paid advocate
 A small IT company
that pro...
Key learnings
 Running a website is core, but Social Media is
the main driver having “eyeballs” there.
 Go where your au...
Thank you!
Jan Geissler
 jan@cmladvocates.net
 Twitter @jangeissler
 http://www.cmladvocates.net
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Social media use in patient advocacy - some practical examples from the CML Advocates Network

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"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

Published in: Health & Medicine, Technology
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Social media use in patient advocacy - some practical examples from the CML Advocates Network

  1. 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 Click on links marked like this
  2. 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. 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. 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. 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. 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. 7. Use of Google Docs to host / update spreadsheet of generics Inofficial CML Generics Registry: Use of Google Docs
  8. 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. 9. Facebook – increasing importance for our advocacy work
  10. 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. 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. 12. Thank you! Jan Geissler  jan@cmladvocates.net  Twitter @jangeissler  http://www.cmladvocates.net

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