schizophrenia explored by robert dossin at the ephmra chapter meeting in milan 2012
DESCRIPTION
Schizophrenia explored presented by Robert Dossin at the EphMRA Chapter Meeting in Milan on June 2012.TRANSCRIPT
Schizophrenia explored
How to define a new strategy in
Schizophrenia exploring the social media
landscape and identify patient barriers
Ghent I Rotterdam I London I Timisoara I New York
www.insites-consulting.com
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
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
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.
3 steps towards a winning strategy
4
OBSERVE UNDERSTAND ACT
4
Where does observing fit in?
5
Discussions Surveys % Observing
Traditionally used most in
the pharmaceutical industry
Not yet fully exploited
in the pharmaceutical
industry
≠ clinical observation
5
Who has
experience
with
observational
research?
7 3 pillars
2 observational tools to understand patients
8
Social Media Netnography Multimedia Ethnography
8
Social media netnography
9
Bottom-up analyses – ‘let data speak’ Top-down analyses Emotional context Evolution over time
WHAT?
HOW?
RESULTS?
Secondary user generated conversations Publicly available sources (no login)
Quantitative AND qualitative - more than buzz monitoring
Relevant conversations on Schizophrenia are scraped Analyses with text-mining software and reading
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
11
What did we do with
11
we analyzed
54 592 online conversations
about schizophrenia
Time scope 01/01/2010-30/11/2011
English French Spanish Italian German
# conversa tions
18 212 26 184 6 421 1 962 1 813
Schizophrenia
More negative discussions than
in other therapeutic areas
Schizophrenia: more negative emotions than other TAs
60% negative emotions
62% positive emotions
When comparing the results with non mental illnesses (e.g. cancer) , it becomes clear that:
1 Discussions in the schizophrenia universe are more negative
2 Discussions are more emotional
English
-1,5 -1
-2,5 -2
-0,5 0
0,5 1
1,5 2
2,5 3
-3
-0,4
3,5
[N = 18 212]
Sentiment
Reference: 58% in domain of prostate cancer Reference: 43% in domain of prostate cancer
Reference: 0.8 in domain of
prostate cancer
Negative emotions, especially in Spain and Italy
lead to a low sentiment of online conversations.
-1,5 -1
-2,5 -2
-0,5 0
0,5 1
1,5 2
2,5 3
-3
-0,4
3,5
[N = 18 212] [N = 26 184] [N = 1 813] [N = 6 421] [N = 1 962]
English French German Spanish Italian
-1,5 -1
-2,5 -2
-0,5 0
0,5 1
1,5 2
2,5 3
-3
3,5
-1,5 -1
-2,5 -2
-0,5 0
0,5 1
1,5 2
2,5 3
-3
3,5
-1,5 -1
-2,5 -2
-0,5 0
0,5 1
1,5 2
2,5 3
-3
-0,7
3,5
-1,5 -1
-2,5 -2
-0,5 0
0,5 1
1,5 2
2,5 3
-3
-2,9
3,5
0,2 1,2
Negative emotions, especially in Spain and Italy lead to
low sentiment.
% Happiness
% Disgust
% Sadness
% Anger
% Fear
51% 40% 29% 31% 7%
44% 31% 9% 21% 7%
53% 33% 22% 29% 2%
59% 50% 41% 49% 30%
60% 60% 41% 46% 9%
French
German
Spanish
Italian
English
Public (mis)perceptions
resulting in a social stigma
Schizophrenia: a term with a negative connotation
The label „schizophrenia‟ is considered „scary‟.
What is schizophrenia associated with?
Aggression
Unpredictability
For ever: incurable and untreatable
Genetically determined
The word schizophrenia prevents our children from being
accepted. I know it frightened me even before my
daughter was diagnosed - ENG
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
Critical incidences of people with schizophrenia
committing crimes. Patients and caregivers often
blame media when mixing „psychopatic‟ with
„schizophrenia‟.
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.
What feeds this negative connotation?
People do not understand that these crimes
are uncommon and not the standard - ENG
It is an invention of a mad society - SP
Consequences of the negative connotation
Patients get socially isolated (even social stigma).
Self-isolation in many cases – not feeling comfortable in social
events.
Not invited to social events – not leaving the house for weeks
No meaningful relationship
Professional problems: patients not being able to keep
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.
This connotation amplifies
all negative aspects of
schizophrenia,
undermines chances for
success and results in a
social stigma.
When the doctor said ‘schizophrenia’ I got
goosebumps. That horrible word was like
serving a sentence
Coping mechanism: avoid the stigma
Patients and caregivers are secretive about the
disease.
Discuss disorder only with a select group of trustees.
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).
An AVOID strategy is very
common:
Don’t tell others
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!
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
Many questions,
difficult to ask
them due to the stigma
They want to talk with fellow patients
in a similar situation.
They want to share experiences
and get opinions from felllow
patients.
They trust fellow patients,
answering on e.g. „Yahoo questions‟,
even more than their own doctor.
Stigma leads to many questions being asked online
Patients and caregiver apply the
avoid strategy, but they still need
information.
Type of questions slightly differ by language
Schizoph. core symptoms
Body parts
Information
Research
Drugs treatments
Social impact
HCP
Causes & Risks
Other general symptoms
Diagnosis
Comorbidity
Trigger conditions
Treatment
Organizations
Pharmacompanies
Drugs side effects
Disorder stages
English French German Spanish Italian
[N = 18 212] [N = 26 184] [N = 1 813] [N = 6 421] [N = 1 962]
92%
15%
30%
12%
6%
13%
8%
2%
3%
1%
2%
2%
4%
6%
5%
1%
1%
65%
58%
62%
36%
47%
28%
32%
17%
24%
23%
21%
10%
12%
2%
1%
1%
4%
44%
49%
34%
37%
41%
16%
27%
10%
11%
12%
6%
7%
6%
2%
9%
2%
5%
62%
72%
58%
68%
35%
37%
34%
41%
29%
15%
21%
16%
11%
10%
4%
5%
5%
87%
60%
36%
52%
31%
64%
28%
26%
24%
12%
7%
6%
6%
3%
1%
8%
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
26
Social media netnography: limitations
Less of the uninvolved patient No probing Only what is relevant for them Internet has no boundaries
26
Multimedia ethnography
WHAT?
HOW?
RESULTS?
Follow a selection of patients. Step into the patient’s shoes. Experience their condition as they do
Patients receive a camera Online, through a blog, created for the study and commenting tools During a longer period of time (> 1 week)
Insights embedded in real-life situations Visualized context (photos, movies...) Emotionally enriched evidence
27
Insights are important, and so is internal involvement
28
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
Conclusions
In Summary
Huge patient barriers to ask their questions to HCPs
Public (mis)perceptions on schizophrenia leading to
social isolation
Conversations on schizophrenia reflect more negative
emotions than other therapeutic areas
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.
Leverage Digital Channel
1
2
3
Enhance Schizophrenia 24x7.com portal to:
Help Patient and caregivers to remove the stigma
Facilitate discussion with other patients/caregivers
Support to increase compliance
Patient needs
Where does schizophrenia24x7 fit in?
Help patients and caregivers remove the stigma
Support what they share
Facilitate discussions with other patients and caregivers
Good example: psoriasis360
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
Questions ?
London office
338 Euston Road
London, NW1 3BT
United Kingdom
Other offices
Ghent | Rotterdam | Timisoara | New York
www.insites-consulting.com
Stefano Zagnoni Digital & Innovation ITALY Business intelligence EMEA, Janssen-Cilag SpA [email protected] Tel +39 02 25101
Robert Dossin Global Director Life Sciences and Healthcare [email protected] T. +442078702579 M. + 447904288898 Follow me on twitter: @robert_dossin
Contact Details
InSites Consulting
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.
Our customers in the healthcare industry
Facilitate discussions with other patients and caregivers
Obey the Conversation rules
Listen Ask questions
Open
Honest
Personal
Engagement