using online tools in rare disease: from theory to practice · using online tools in rare disease:...

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

Using online tools in rare disease:

from theory to practice

Email: pete.chan@tudor-reilly.com