schizophrenia explored by robert dossin at the ephmra chapter meeting in milan 2012

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

info@insites-consulting.com

www.insites-consulting.com

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

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