using online tools in rare disease: from theory to practice · using online tools in rare disease:...
TRANSCRIPT
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Using online tools in rare disease:
from theory to practice
Findacure workshop
30 January 2015
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Global online content is on a sharp upward trajectory
Volume of global digital information created and shared grew 9x in five years to nearly
2 zettabytes* in 2011
* 1 zettabyte = 1 trillion gigabytes
Digital
information
created &
shared
(zettabytes)
0
2
4
6
8
2005 2007 2009 2011 2013E 2015E
Source: IDC report ‘Extracting value from chaos’ 6/11; incorporated in KPCB Internet Trends 2013 presentation
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A recent survey shows the internet is now the top source of
clinical trial information
52%
41%
32%30%
22% 22%20% 20%
13%
20% 20%
46%
32%
39%
21%
8%11%
15%
0%
10%
20%
30%
40%
50%
60%
Preferred
Actual
Source: Center for Information & Study on Clinical Research Participation (CISCRP);
2013 Perception & Insights Study, N=5,701 from 19 countries; July 2013
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Our approach to online patient recruitment
Captures people searching for general
health information and directs them to a
website dedicated to the clinical trial
Prescreener questionnaire allows visitors to
register interest in a clinical trial
Gives visitors more information about the
trial and directs them to a prescreener
questionnaire
Disease awareness website
Clinical trial website
Questionnaire
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Where we are now
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www.earlysymptomsalzheimers.com
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Visitors to the Alzheimer’s disease awareness
site have an option to click through to find out
more about the Scarlet RoAD clinical trial and
register interest through a prescreener.
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Theory vs practice
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A few thoughts
Current legislation
What does Google actually allow?
Tips for mitigating risk— Ethics approvals of clinical trial materials— Clear privacy policy— Data protection regulations
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Google AdWords in brief
Keyword Planner
Match types
Planning and implementing a campaign
Cost management, with help from Google
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Geo-targeted advertising – as narrow or broad as you like
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The DevelopAKUre clinical trial in
alkaptonuria
13
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We implemented Google advertising for this
rare disease trial across Europe in over 20
languages
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Online listening tools
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The future?
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Useful resources
• Jellyfish: www.jellyfish.co.uk• JTID: www.jtid.co.uk• Social Media Advance: www.socialmediaadvance.com
Training
• MOZ: www.moz.com/learn/seo • Google AdWords: www.google.co.uk/adwords/onlineclassroom• Think with Google: www.thinkwithgoogle.com
Online learning