"The Networked Patient Group: How technology changes the face of patient advocacy", presented by Jan Geissler (@jangeissler) at European Patient Innovation Summit on 4 Oct 2016

1. The Networked Patient
Group: How Digital
Technologies are Changing
the Face of Patient Advocacy
Jan Geissler, jan@cmladvocates.net
Co-founder, CML Advocates Network
Chair, LeukaNET e.V.
Founder, Patvocates
Director, European Patients’ Academy (EUPATI)
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Images marked
with
are hyperlinked

2. 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
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3. Digital Technologies have Turned the Power
Balance Upside Down
 Past: The power of having resources
• e.g. travel costs, dissemination networks, print,
access to privileged information
• Patient organisations were doomed to act locally
and within the grace of the professional community
 Today, with barely any budget, patient advocacy groups:
• Serve patients anywhere anytime
• Have access to all professional information
• Are collaborating globally
• Can run campaigns instantly
• Can generate their own patient evidence
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4. Use of Digital Technologies by Patient
Advocacy in Practice
 Reach out and campaign
• Reach out to patients, policymakers and media
• Mobilize activists
 Support and share
• Provide information and support
• Provide services and apps
• Connect advocates
 Collaborate and do research
• Link up with experts globally
• Collect evidence through surveys and studies
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5. Geographical Scope: International,
Connecting 109 Leukemia Patient
Organisations, 82 Countries Today
About 1/3 of members
serve “all leukemias“, not just CML
CML, chronic myelogenous leukaemia 5

6. Global CML Advocates Network
Would Not Exist Without Social Media
 Open-source community
platform as the “information hub”
 Heavy use of Facebook
 Use of Google Docs for online tables
 Twitter walls at our annual congress
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7. Facebook –
Go Where Your Patients
Are… (But Remember
Their Two Identities)
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8. Our CML Generics Registry:
Use of Google Docs
Use of
Google Docs
to host / update
spreadsheet of
generics
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9. Using SlideShare and authorSTREAM
for Slides and Webinars
 Uploading PPT slides and
embedding them on the
website takes ~10 minutes
 Even free webinars
are possible if audio is
recorded as MP3
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10. #WorldCMLDay on 9/22:
Coordinated Campaigns Across the World
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11. Role of Twitter:
Global Live Participation in our Meetings
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12. Network-based, Patient-generated
Evidence: Our Adherence Research
12 languages, 2546 patients, 79 countries, 4 months
@ cmladvocates.net/adherence
Low adherent:
21%
Medium
adherent: 47%
Highly adherent:
33%
www.cmladvocates.net/adherence
Sharf et al., Haematol 2013;98(s1), EHA-Abstract [1104];
Geissler et al., Blood 2013;112:4023. ASH-Abstract [4023] 12

13. Mobile App
“CML Today”
 Tracks regular intake of CML
medicines and provides reminders
 Tracks lab results
and treatment response
 Local CML patient organisations´
profile with information in local
language
• English, German, French, Spanish,
Portuguese, Hebrew, Arabic
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14. Ad-hoc Online Working Groups: Wiggio.com,
Slack, Samepage.io
It only takes 5 minutes to set up a free “virtual workspace”
 E-mail mailing list reflector (e.g. xyz@wiggiomail.com)
 Shared file space
 Shared calendar
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15. Key Learnings
 The networked patient organisation is a reality (in HIV, leukaemia,
melanoma…), thanks to advancing digital technology
 Go where your audience is…. and serve them there
 Age or web access are no longer the challenges, but educational level
and ethnic minorities
 Embrace technology, but don’t make it feel like “tech”:
• Make best use of services like Facebook, Twitter, YouTube,
SlideShare, authorSTREAM at “close to zero” cost
 Advocacy groups are key to generating patient evidence in research
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16. Thank You!
Jan Geissler
 jan@patvocates.net
 Twitter@jangeissler
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