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 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 Consultingwww.insites-consulting.comGhent I Rotterdam I London I Timisoara I New York
Using Social Media, helping patientsIn this session Janssen and InSitesConsulting will show how using socialmedia led to new insights for Janssen‟sSchizophreni team.This allowed future development of awebsite and other communicationsmaterial to be optimised, recognising thesocial stigma and cultural differences. 2
ObjectivesIn support of the product launch ofXeplion and in support for theschizophrenia24x7.com Janssen‟sobjective is to gain insights in publicdiscussions on schizophrenia.The study is mainly focused oninformation needs and how to apply thisis in (digital) communications.
3 steps towards a winning strategy OBSERVE UNDERSTAND ACT 4 4
Where does observing fit in?% Surveys Discussions Observing ≠ clinical observationTraditionally used most in Not yet fully exploitedthe pharmaceutical industry in the pharmaceutical industry 5 5
2 observational tools to understand patients Social Media Netnography Multimedia Ethnography 8 8
Social media netnographyWHAT? Secondary user generated conversations Publicly available sources (no login) Quantitative AND qualitative - more than buzz monitoringHOW? Relevant conversations on Schizophrenia are scraped Analyses with text-mining software and readingRESULTS? Bottom-up analyses – ‘let data speak’ Top-down analyses Emotional context Evolution over time 9 9
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
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
Schizophrenia More negativediscussions than in othertherapeutic areas
Schizophrenia: more negative emotions than other TAsWhen comparing the results with non mental illnesses (e.g. cancer) , it becomes clear that: English1 Discussions in the schizophrenia universe are more negative2 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
Negative emotions, especially in Spain and Italy lead tolow sentiment. % Happiness % Sadness % Fear % Anger % DisgustEnglish 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%
Public(mis)perceptions resulting in a social stigma
Schizophrenia: a term with a negative connotationThe 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 - ENGWhat 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
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
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
Coping mechanism: avoid the stigma Patients and caregivers are secretive about theAn 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: dont tell them!
Caregivers and organisations try to increase awarenessCaregivers (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 positivesignals
Many questions, difficult to askthem due to the stigma
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.
Social media netnography: benefitsAccess to highly involved patientand difficult topicsMany conversationsMost on relevant topicsIdeal to explore newTAs/topics/countries 25 25
Social media netnography: limitationsLess of the uninvolvedpatientNo probingOnly what is relevant for themInternet has no boundaries 26 26
Multimedia ethnographyWHAT? Follow a selection of patients. Step into the patient’s shoes. Experience their condition as they doHOW? 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
Insights are important,and so is internal involvement 28
Multimedia ethnography: benefitsBe part of daily life & contextLooking through their eyesLonger time span allows forricher feedbackSample can be controlledand probing is possibleLess intrusive 29
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
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.. Im 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 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
Patient needs Where doesschizophrenia24x7 fit in?
Help patients and caregiversremove the stigmaSupport what they share
Facilitate discussions withother patients and caregiversGood example: psoriasis360
Observationalresearch now part of the jigsawJanssen is now very open to the optionsthat this route can uncover – thesemethodologies are now integrated in ourmethodology portfolio! 37
Contact DetailsStefano ZagnoniDigital & Innovation ITALYBusiness intelligence EMEA, Janssen-Cilag SpAszagnoni@its.jnj.comTel +39 02 25101Robert DossinGlobal Director Life Sciences and HealthcareRobert.Dossin@insites-consulting.comT. +442078702579M. + 447904288898Follow me on twitter: @robert_dossin InSites Consulting London office 338 Euston Road London, NW1 3BT United Kingdom Other offices Ghent | Rotterdam | Timisoara | New York email@example.com www.insites-consulting.com
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 onageing (Annelies Verhaeghe, 2010) and an ESOMAR Best Paper Nominationwith a paper co-presented with UCB at the ESOMAR Health in NY 2010.