Securing a cancer patient voice using Social Media: Workshop on hands-on use of websites, forums, Facebook, Twitter, videos, slide sharing, virtual spaces for advocacy. Presented by Jan Geissler @jangeissler at #ESGO2015 on 24 Oct 2015. Click on "hand" icon to see examples on the web!

1. Securing a cancer patient
voice using Social Media
Workshop on hands-on use of websites, forums, Facebook,
Twitter, videos, slide sharing, virtual spaces for advocacy
at #ESGO2015, 24 Oct 2015
Jan Geissler, jan@patvocates.net
Co-founder, CML Advocates Network
Chair, LeukaNET e.V.
Founder, Patvocates
Director, European Patients’ Academy (EUPATI)
Click on
examples

2. Topics I may address today
 About my own involvement in Social Media
 Examples for use of:
• Discussion Forums
• Wikipedia
• Twitter
• Facebook
• YouTube
• Flickr
• Google Docs
• SlideShare, authorSTREAM
• Wiggio
 Resources…
Click on
examples

3. Social Media pre-Facebook/Google:
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

4. Global CML Advocates Network:
Would not exist without Social Media
Global platform for leukemia patient
group leaders, founded in 2007.
103 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

5. (Traditional) 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

6. 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"

7. 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

8. Facebook –
increasing importance
in patient advocacy

9. 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)

10. 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

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

12.  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

13. 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

14. 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

15. 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.

16. Thank you!
Jan Geissler
 jan@patvocates.net
 Twitter @jangeissler