From Big Data to Big Insights: Social media as central nervous system for learning about epilepsy, presented by Annelies Verhaeghe at the ESOMAR Future of Healthcare Webinar on November 14, 2013.

1. Are we missing
the boat?

2. V. V. V.

3. User generated content
& life caching

4. Social media netnography
= research methodology that makes use of
publicly available user-generated-content in
order to answer a research question

5. A reversed research process
Traditional research
SURVEY / TOPIC GUIDE
DEVELOPMENT
SAMPLING
RESPONDENTS
ACTIVE
DATA COLLECTION
ANALYSIS
Social Social media netnography
media netnography
SAMPLING
UNIVERSE DETECTION
PASSIVE
DATA COLLECTION
FRAMEWORK
DEVELOPMENT
TOP-DOWN & BOTTOM-UP
CONTENT & TEXT ANALYTICS

6. Patient centricity at

8. Health care
Brand C
Wishes for the future
night
Budget
Husband
Side effects
Job
normal behaviour
Confused
Control
Diagnosis
Helpful
Scared
Driving
School
Problem
Dosage
Brand A
Seizures Awareness &
Satisfaction
Headache
knowledge
Bottom up segmentation
Brand B
Food & drinks
Important
Having pain
Treatment
Difficult
Children

9. 25%
Natural & medical language
about seizures
Brand B

10. PETIT MAL
•
•
•
•
Also called ‘absence’
People just stand and stare vacantly
My mind was wandering, blank, in a daze
When asked to speak, would talk then just go blank and lose my entire train of thought
and having no idea what I had implied
• My eyes would blink rapidly and then I would go blank as if I were daydreaming and my
mind would be shot
Brand B

11. 360°
Awareness &
Knowledge
Brand B

12. Brand A has been a fabulous
med for my daughter. She has
not experienced any negative
side effects.
I've been on Brand A
for about a year and
have only had once
seizure since. Side
effects that I have are
occasional dizzyness,
shakiness, and spotted
vision. But other than
that, I'm pretty happy. I
was started out on
Brand B and that didn't
work
Brand B

13. Answers to questions you did not ask
It raises a lot of new questions
Brand B

14. Can you hide the elephant?

15. It’s not a shortcut

16. You don’t know
Who you are talking to

17. You never know
What you are going to get

18. Social media netnography
Research community

20. ‘I have epilepsy so I relate to this!
It is good information. I would "
about making sure there is include
something in the ‘do's and
don'ts’ nothing near me that I
could hurt myself on; keep the area
around me clear of anything that I
could hit my head on.

21. It's not my seizure
disorder that causes me
to stay home. I'm a
homebody, and my home
is my castle’
‘Most people outside of my
family don't know of my
condition because I don't
want my condition to define
who I am.’

22. A crucial role for research

23. Humanizing research