Janssen partnered with InSites Consulting to conduct a social media netnography and multimedia ethnography study to better understand patient discussions and experiences with schizophrenia. The study found that discussions about schizophrenia were more negative than other health topics, with stigma and misperceptions contributing to social isolation. Janssen used the insights to enhance their schizophrenia website and support discussions between patients and caregivers.

1. Schizophrenia explored
How to define a new strategy in
Schizophrenia exploring the social media
landscape and identify patient barriers
EphMRA, Milano, 5 July 2012
Stefano Zagnoni
Digital & Innovation ITALY
Business intelligence EMEA, Janssen-Cilag SpA
Robert Dossin
Global Director Life Sciences and Healthcare, InSites
Consulting
www.insites-consulting.com
Ghent I Rotterdam I London I Timisoara I New York

2. Using Social Media,
helping patients
In this session Janssen and InSites
Consulting will show how using social
media led to new insights for Janssen‟s
Schizophreni team.
This allowed future development of a
website and other communications
material to be optimised, recognising the
social stigma and cultural differences.
2

3. Objectives
In support of the product launch of
Xeplion and in support for the
schizophrenia24x7.com Janssen‟s
objective is to gain insights in public
discussions on schizophrenia.
The study is mainly focused on
information needs and how to apply this
is in (digital) communications.

4. 3 steps towards a winning strategy
OBSERVE UNDERSTAND ACT
4 4

5. Where does observing fit in?
% Surveys Discussions Observing
≠ clinical observation
Traditionally used most in Not yet fully exploited
the pharmaceutical industry in the pharmaceutical
industry
5 5

6. Who has
experience
with
observational
research?

7. 7 3 pillars

8. 2 observational tools to understand patients
Social Media Netnography Multimedia Ethnography
8 8

9. Social media netnography
WHAT?
Secondary user generated conversations
Publicly available sources (no login)
Quantitative AND qualitative - more than buzz monitoring
HOW?
Relevant conversations on Schizophrenia are scraped
Analyses with text-mining software and reading
RESULTS?
Bottom-up analyses – ‘let data speak’
Top-down analyses
Emotional context
Evolution over time
9 9

10. Play by the book!
Respect key MR principles
ESOMAR & BHBIA guidelines
PHARMA specific
requirements and drug
safety/pharmacovigilance
Even AGENCY-CLIENT
specific processes
10 10

11. What did we do with
we analyzed
54 592
online conversations
about schizophrenia
Time scope 01/01/2010-30/11/2011
English French Spanish Italian German
# conversa
18 212 26 184 6 421 1 962 1 813
tions
11 11

12. Schizophrenia
More negative
discussions than
in other
therapeutic areas

13. Schizophrenia: more negative emotions than other TAs
When comparing the results with non mental illnesses (e.g. cancer) , it becomes clear that:
English
1 Discussions in the schizophrenia universe are more negative
2 Discussions are more emotional
Sentiment
[N = 18 212]
62% positive 60% negative
emotions emotions 3
3,5
2,5
Reference: 58% in domain of prostate cancer Reference: 43% in domain of prostate cancer
2
1,5
1
0,5
0
-0,5
-1
-1,5
-2
-2,5
-3
-0,4
Reference: 0.8
in domain of
prostate
cancer

14. Negative emotions, especially in Spain and Italy
lead to a low sentiment of online conversations.
English French German Spanish Italian
[N = 18 212] [N = 26 184] [N = 1 813] [N = 6 421] [N = 1 962]
3,5 3,5 3,5 3,5 3,5
3 3 3 3 3
2,5 2,5 2,5 2,5 2,5
2 2 2 2 2
1,5 1,5 1,5 1,5 1,5
1 1 1 1 1
0,5 0,5 0,5 0,5 0,5
0 0 0 0 0
-0,5 -0,5 -0,5 -0,5 -0,5
-1 -1 -1 -1 -1
-1,5 -1,5 -1,5 -1,5 -1,5
-2 -2 -2 -2 -2
-2,5 -2,5 -2,5 -2,5 -2,5
-3 -3 -3 -3 -3
-0,4 0,2 1,2 -0,7 -2,9

15. Negative emotions, especially in Spain and Italy lead to
low sentiment.
% Happiness % Sadness % Fear % Anger % Disgust
English 51% 40% 29% 31% 7%
French 44% 31% 9% 21% 7%
German 53% 33% 22% 29% 2%
Spanish 59% 50% 41% 49% 30%
Italian 60% 60% 41% 46% 9%

16. Public
(mis)perceptions
resulting in a
social stigma

17. Schizophrenia: a term with a negative connotation
The label „schizophrenia‟ is considered „scary‟.
The word schizophrenia prevents our children from being
accepted. I know it frightened me even before my
daughter was diagnosed - ENG
What is schizophrenia associated with?
Aggression
Unpredictability
For ever: incurable and untreatable
Genetically determined
You don’t say someone in your family suffers from
schizophrenia. People think it is a family thing. I feel they
look at you differently - SP

18. What feeds this negative connotation?
Critical incidences of people with schizophrenia
committing crimes. Patients and caregivers often
blame media when mixing „psychopatic‟ with
„schizophrenia‟.
People do not understand that these crimes
are uncommon and not the standard - ENG
People without a proper diagnosis, or only a
self diagnosis, claiming to be schizophrenic.
Incorrect stories about Schizophrenia – usually
related to violence / aggressiveness, a dangerous
patient.
Word of mouth on the above mentioned
reasons, increased by fear.
It is an invention of a mad society - SP

19. Consequences of the negative connotation
Patients get socially isolated (even social stigma).
This connotation amplifies Self-isolation in many cases – not feeling comfortable in social
events.
all negative aspects of
Not invited to social events – not leaving the house for weeks
schizophrenia, No meaningful relationship
undermines chances for
success and results in a Professional problems: patients not being able to keep
social stigma. a job or find a new job.
Practical problems.
E.g. Financial issues and housing problems
Self-identification with public image of schizophrenia.
Diagnosis becomes even more shocking.
When the doctor said ‘schizophrenia’ I got
goosebumps. That horrible word was like
serving a sentence

20. Coping mechanism: avoid the stigma
Patients and caregivers are secretive about the
An AVOID strategy is very disease.
common:
Discuss disorder only with a select group of trustees.
Don’t tell others
Discuss indirectly: “someone I know” or “someone told
me about...”
Reduce severity / importance:
talk about isolated crisis time ago,
not chronic condition,
avoid using the word schizophrenia (but use e.g.
depression).
If you get good treatment for your schizophrenia then
people cannot see it with the bare eye, so the main issue
then is that people already know that you have it... Solution:
don't tell them!

21. Caregivers and organisations try to increase awareness
Caregivers (mainly family members and partners), much more than patients, try to actively increase awareness
& by doing so changing the common perception on schizophrenic patients.
Bumper stickers: “Someone I love has schizophrenia and she is amazing”
Supporting YouTube Videos
Sharing blogs from people that are trying to raise awareness
Petition to change the name schizophrenia to “social integration disorder”
They are supported by several local organisations but feel still isolated.
Both patients & caregivers are strongly affected and negative, but still they are hanging on to all positive
signals

22. Many
questions,
difficult to ask
them due to the
stigma

23. Stigma leads to many questions being asked online
They want to talk with fellow patients
in a similar situation.
They want to share experiences
Patients and caregiver apply the and get opinions from felllow
avoid strategy, but they still need patients.
information.
They trust fellow patients,
answering on e.g. „Yahoo questions‟,
even more than their own doctor.

24. Type of questions slightly differ by language
English French German Spanish Italian
[N = 18 212] [N = 26 184] [N = 1 813] [N = 6 421] [N = 1 962]
Schizoph. core symptoms 65% 92% 44% 62% 87%
Body parts 58% 15% 49% 72% 60%
Information 62% 30% 34% 58% 36%
Research 36% 12% 37% 68% 52%
Drugs treatments 47% 6% 41% 35% 31%
Social impact 28% 13% 16% 37% 64%
HCP 32% 8% 27% 34% 28%
Causes & Risks 17% 2% 10% 41% 26%
Other general symptoms 24% 3% 11% 29% 24%
Diagnosis 23% 1% 12% 15% 12%
Comorbidity 21% 2% 6% 21% 7%
Trigger conditions 10% 2% 7% 16% 6%
Treatment 12% 4% 6% 11% 6%
Organizations 2% 6% 2% 10% 3%
Pharmacompanies 1% 5% 9% 4% 1%
Drugs side effects 1% 1% 2% 5% 8%
Disorder stages 4% 1% 5% 5% 2%

25. Social media netnography: benefits
Access to highly involved patient
and difficult topics
Many conversations
Most on relevant topics
Ideal to explore new
TAs/topics/countries
25 25

26. Social media netnography: limitations
Less of the uninvolved
patient
No probing
Only what is relevant for them
Internet has no boundaries
26 26

27. Multimedia ethnography
WHAT?
Follow a selection of patients.
Step into the patient’s shoes.
Experience their condition as they do
HOW?
Patients receive a camera
Online, through a blog, created for the study
and commenting tools
During a longer period of time (> 1 week)
RESULTS?
Insights embedded in real-life situations
Visualized context (photos, movies...)
Emotionally enriched evidence
27

28. Insights are important,
and so is internal involvement
28

29. Multimedia ethnography: benefits
Be part of daily life & context
Looking through their eyes
Longer time span allows for
richer feedback
Sample can be controlled
and probing is possible
Less intrusive
29

30. Conclusions

31. In Summary
Conversations on schizophrenia reflect more negative
emotions than other therapeutic areas
Public (mis)perceptions on schizophrenia leading to
social isolation
Huge patient barriers to ask their questions to HCPs

32. How did Janssen use this to support patients & caregivers
Knowing schizo symptoms is one thing, experiencing it
is the other. If you think this is what it’s like, then I’m
sure you do not have Paranoid schizophrenia!
I have this.. I'm being serious, it started a while ago
and it was scary. I was in denial but this pretty much
just confirmed it.

33. Leverage Digital Channel
Enhance Schizophrenia 24x7.com portal to:
1 Help Patient and caregivers to remove the stigma
2 Facilitate discussion with other patients/caregivers
3 Support to increase compliance

34. Patient needs
Where does
schizophrenia24x7 fit in?

35. Help patients and caregivers
remove the stigma
Support what they share

36. Facilitate discussions with
other patients and caregivers
Good example: psoriasis360

37. Observational
research now part of
the jigsaw
Janssen is now very open to the options
that this route can uncover – these
methodologies are now integrated in our
methodology portfolio!
37

38. Questions ?

39. Contact Details
Stefano Zagnoni
Digital & Innovation ITALY
Business intelligence EMEA, Janssen-Cilag SpA
szagnoni@its.jnj.com
Tel +39 02 25101
Robert Dossin
Global Director Life Sciences and Healthcare
Robert.Dossin@insites-consulting.com
T. +442078702579
M. + 447904288898
Follow me on twitter: @robert_dossin
InSites Consulting
London office
338 Euston Road
London, NW1 3BT
United Kingdom
Other offices
Ghent | Rotterdam | Timisoara | New York
info@insites-consulting.com
www.insites-consulting.com

40. Fact sheet
 Spin-off of top-ranked business school
 15 years of experience and know-how
 Pioneer and innovator in online methods
 Covering any marketing domain
 Fully independent
 Ghent, Rotterdam, London, Timisoara, New York
 125 passionate employees
 Proprietary research panel in +25 countries
 Most awarded agency by ESOMAR
Including ESOMAR Young Researcher‟s Award with a health paper on
ageing (Annelies Verhaeghe, 2010) and an ESOMAR Best Paper Nomination
with a paper co-presented with UCB at the ESOMAR Health in NY 2010.

41. Our customers in the healthcare industry

42. Facilitate discussions with
other patients and caregivers
Obey the Conversation rules
Open Personal
Honest Engagement
Listen Ask questions