"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
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The Networked Patient Group: How technology changes the face of patient advocacy
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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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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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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