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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)
1
Images marked
with
are hyperlinked
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
2
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
3
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
4
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
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
6
Facebook –
Go Where Your Patients
Are… (But Remember
Their Two Identities)
7
Our CML Generics Registry:
Use of Google Docs
Use of
Google Docs
to host / update
spreadsheet of
generics
8
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
9
#WorldCMLDay on 9/22:
Coordinated Campaigns Across the World
10
Role of Twitter:
Global Live Participation in our Meetings
11
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
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
13
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
14
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
15
Thank You!
Jan Geissler
 jan@patvocates.net
 Twitter@jangeissler
16

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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) 1 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 2
  • 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 3
  • 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 4
  • 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 6
  • 7. Facebook – Go Where Your Patients Are… (But Remember Their Two Identities) 7
  • 8. Our CML Generics Registry: Use of Google Docs Use of Google Docs to host / update spreadsheet of generics 8
  • 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 9
  • 10. #WorldCMLDay on 9/22: Coordinated Campaigns Across the World 10
  • 11. Role of Twitter: Global Live Participation in our Meetings 11
  • 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 13
  • 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 14
  • 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 15
  • 16. Thank You! Jan Geissler  jan@patvocates.net  Twitter@jangeissler 16