Are we missing

the boat?

V. V. V.

& life caching

User generated content

Social media netnography

= research methodology that makes use of

publicly available user-generated-content in

order to answer a research question

Social media netnography

A reversed research process

Traditional research Social media netnography

SURVEY / TOPIC GUIDE

DEVELOPMENT

SAMPLING

RESPONDENTS

ACTIVE

DATA COLLECTION

ANALYSIS

SAMPLING

UNIVERSE DETECTION

PASSIVE

DATA COLLECTION

FRAMEWORK

DEVELOPMENT

TOP-DOWN & BOTTOM-UP

CONTENT & TEXT ANALYTICS

Patient centricity at

Seizures

Health care

Awareness &

knowledge Treatment

Helpful Diagnosis

Problem night

Difficult

Food & drinks

Satisfaction

School

Dosage

Budget

Control

Driving

Side effects

Husband Brand A

Brand B

normal behaviour

Job

Headache

Confused

Brand C

Having pain

Wishes for the future

Important

Scared

Bottom up segmentation

Children

Natural & medical language

about seizures

25%

Brand B

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

Brand B

360° Awareness &

Knowledge

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

Answers to questions you did not ask

It raises a lot of new questions

Brand B

Can you hide the elephant?

It’s not a shortcut

You don’t know

Who you are talking to

You never know

What you are going to get

Social media netnography Research community

‘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.

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.’

A crucial role for research

Humanizing research