using online tools in rare disease: from theory to practice · using online tools in rare disease:...
TRANSCRIPT
Using online tools in rare disease:
from theory to practice
Findacure workshop
30 January 2015
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
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
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
Where we are now
www.earlysymptomsalzheimers.com
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.
Theory vs practice
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
Google AdWords in brief
Keyword Planner
Match types
Planning and implementing a campaign
Cost management, with help from Google
11
Geo-targeted advertising – as narrow or broad as you like
The DevelopAKUre clinical trial in
alkaptonuria
13
14
We implemented Google advertising for this
rare disease trial across Europe in over 20
languages
Online listening tools
17
The future?
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
