#Patients2018

InsightsfromCISCRP’s2017Percep9ons&InsightsStudy

March2018

#Patients2018

Summary •  Overall public and patient attitudes, perceptions and experiences

consistent with past studies

•  Probing to identify underlying issues and opportunities

•  Two Primary Areas:

–  Where should our efforts to improve awareness and raise clinical trial literacy focus?

–  Where is patient engagement being most hindered/limited?

#Patients2018

CISCRP2017P&IStudyMethodologyObjec9ves: •  Rou9neperiodicmonitoringofpublic,pa9entsandstudyvolunteers

•  Introducenewareasofinquiryforaddi9onalinsightsandfutureresearch

Ques9onnaireDevelopment:

Globalques9onnairedevelopedwithbroadstakeholderinput

DataCollec9onPeriod: May2017toJuly2017

Methodology: SurveydistributedonlinewithsupportfromAcurian,Clariness,CureClick,IQVIA,andHealthUnlocked.

FinalSampleSize: n=12,427

CISCRP’sResearchServicesTeamfocusingonimprovingourunderstandingofpa2entsandthepublic

•  Broad,Interna9onalStudies•  CustomResearchProjects•  Pa9entAdvisoryBoards•  Pa9entJourneyAssessments

#Patients2018

RespondentProfile2017

(n=12,427)2015

(n=12,009)

GenderFemaleMaleOther

59%40%1%

54%46%

Region

NorthAmericaSouthAmerica

EuropeAsiaPacific

Africa

46%(n=5,693)7%(n=915)28%(n=3,541)14%(n=1,699)5%(n=579)

63%(n=6,665)6%(n=877)15%(n=2,618)12%(n=1,302)5%(n=547)

Race(topmen9ons)

WhiteBlackAsian

81%6%5%

82%7%4%

Ethnicity(topmen9ons)

NotHispanic/La9noOriginHispanic/La9noOrigin

88%8%

83%8%

Educa9on

NoSchool/PrimaryEduOnlySome/CompletedHS

Some/CompletedCollegeSome/CompletedPost-Graduate

2%24%58%16%

2%24%61%13%

#Patients2018

Self-ReportedGeneralKnowledgeandWillingnesstoPar9cipate

84%73% 71%

94%82% 77% 76%

88%

Europe SouthAmerica AsiaPac NorthAmerica

PercentofTotalWhoUnderstandtheTerm‘ClinicalResearchStudy’

SomewhatorVeryWell

2013 2017

58%64%

73%85%

66%72%

63%

83%

Europe SouthAmerica AsiaPac NorthAmerica

PercentSomewhatorVeryWillingtoPar9cipateinaClinicalResearch

Study

2013 2017

Source: CISCRP, 2013 and 2017; N = 5,701 and N= 10,233 people who have never participated

#Patients2018

Percep9onsbyRace/EthnicityPercentofTotal(Non-Par9cipants;*withDisease;+PastPar9cipants)

Black White La9nAmerican

Asian

WillingtoPar9cipate(Very,SW)

77% 80% 75% 53%

NotConfidentFindingaCT(NotVery,NotatAll)

24%

38%

39%

57%

PerceiveCTasUnsafe(NotVery,NotatAll)

9%

8%

9%

21%

Don’tTrustthePharmaceu9calIndustry(NotMuch,NotatAll)

32% 28% 31% 21%

HaveBeenAskedtoPar9cipateinaCT* 32% 25% 18% 14%

WillingtoPar9cipateinAnotherCT+(Very,SW)

80%

76%

74%

46%

#Patients2018

LimleConnec9onandRelevance•  84%feelthatitisimportantthattheyknowaboutclinicalresearchbeing

conductedintheircommunity;but…

•  59%reportnotknowingwhereclinicalresearchisconducted

•  66%can’tnameanagencythatoverseesresearchsafety

•  40%believethatittakeslessthan5yearstodevelopanewmedicaltherapy

Source: CISCRP, 2017 Perceptions & Insights Study; N= 10,233 people who have never participated

#Patients2018

TheImpactofFamiliarityNon-

Par9cipantsPast

Par9cipant

Percentverywillingtopar9cipate(again) 30% 68%

Percentveryconfidentinfindingan(another)appropriateclinicaltrial

18% 46%

Percentverycomfortablespeakingaboutclinicaltrialswithothers

39% 81%

Percentwhobelievethatclinicalresearchvolunteersmakeamajorcontribu9ontopublichealth

16% 96%

Source: CISCRP, 2017 Perceptions & Insights Study; N= non-participants; 2,194 participants

#Patients2018

EstablishingRelevanceandConnec9on

2017-2018

MT Pharmacy

National Newspaper Supplements 2002

#Patients2018

EnablingEngagement

28%

58%

72%32%

NOAdvocacyGroup

Yes

ResearchCenter

MyHCP

Friend/Family

IfYes,ByWhom?Haveyoueverbeenaskedtopar9cipate?

6%

4%

Source: CISCRP, 2017 Perceptions & Insights Study N=7,988 with a medical condition

#Patients2018

HCPsasEnablers

•  62%ofpa9entsratetheirHCPasthetoppreferredsourceforinforma9onaboutclinicalresearch

•  68%feelthatitisveryimportantthattheirHCPisawareofappropriateclinicaltrials

•  71%ofpa9entssaythattheywouldspeakwiththeir

physicianornursepriortodecidingtopar9cipate

•  83%ofpa9entsconsidertheirphysician’srecommenda9onatopfactorinfluencingtheirdecisiontopar9cipate

Source: CISCRP, 2017 Perceptions & Insights Study; N= 10,233

•  Higherwillingnesstopar9cipate•  Morecomfortablediscussingand

iden9fyingclinicalstudyop9ons•  MorelikelytoviewtheICFas‘very

easytounderstand”•  Foundclinicaltrialmedicinekit

instruc9onseasiertounderstand’•  Morelikelytoreportthatstudystaff

answeredtheirques9ons‘verywell’•  Lesslikelytodropoutprematurely•  Morelikelytopar9cipateagainandto

recommendclinicaltrialstoothers

Pa9entsWhoSaidtheirHCPwas‘Very’InformedaboutCTs

#Patients2018

HCPReferralAttudesandExperienceMDs

(N=755)Nurses

(N=1,255)ReceivedspecialtrainingonCTinschool 40% 45%

Amendedlecture(s)onCTatsocietymee9ngs 39% 21%

Considerthemselvesfamiliar(SW/Very)withCTs 88% 69%

Comfortable(SW/Very)providingCTinfotopa9ents 88% 63%

Comfortable(SW/Very)discussingCTopportuni9eswithpa9ents

91% 72%

Havereferredtheirpa9entstoclinicaltrials 60% 17%

Mediannumberofpa9entsreferredannually 5 2

Mediannumberofpa9entsseenannually 3,100 5,560

Source: Tufts CSDD 2015

Source: Tufts CSDD; Getz K. Examining the Role of HCPs as Patient Engagement Facilitators in Clinical Trials. Clinical Therapeutics. Sept. 2017

#Patients2018

Ini9a9vestoincreaseHCPEngagement•  Founda9on,Pa9entAvocacyGroupandTradeAssocia9on(e.g.,ACRP)programs

•  TransCelerateBiopharmaandCTTIini9a9ves

•  CISCRP:–  AWAREforALLprograms–  SpeakersBureauformedicalcommuni9es–  Bestprac9cesugges9onsandHCPmaterialsforResearchCenterandCTSIs–  PABsandPa9entJourneyworkshops–  LayLanguageClinicalTrialResultsSummaries

#Patients2018

Par9cipa9onBurdenWhatdidyouleastlikeaboutyourpar9cipa9on

experience?(Top5men2ons)

PercentofTotal

NotknowingwhetherIwasgetngtheinves9ga9onaltreatment

30%

Loca9onoftheresearchcenter 22%

Studyvisitsweretoo9meconsuming 19%

Compensa9onwasnotenoughgivenstudydemands 16%

Studyproceduresweretoocumbersome 15%

Source: CISCRP, 2017: N= 94

AverReviewingtheInformedConsentFrom,whatledyoutodecideNOTtopar9cipate

PercentofTotal

Expectedburdenofpar9cipa9on 54%

Scien9fic/studyrisks 25%

Lackofsufficientinforma9on 14%

Concernsaboutprivacyandconfiden9ality 7%

Source: CISCRP, 2017: N= 2,849 Patients Who Completed Participation

#Patients2018

TransparencyandDisclosurePost-Par9cipa9on

74% 72%

59%

49% 46%

Myindividualresults

Highlevelresults

summary

Informa9onaboutmytreatmentgroup

Whetherthedrugwasapproved

Brandnameofthedrug

Percentmen2oning

Whatinforma9onwouldyoubemostinterestedinreceivingavercomple9ngyourstudy?

Source: CISCRP 2017 P&I Study; N=2,194

PercentofTotal

Feelitis‘Very’or‘SW’importanttoreceiveasummaryoftheirclinicaltrialresults?

Receivedasummaryoncetheclinicaltrialended

European 89% 32%

NorthAmerican

93% 25%

SouthAmerican

94% 55%

Asia-Pacific 96% 56%

#Patients2018

TopEngagementIni9a9vesImplemented/Piloted/Planned2017

16

77% 77%70%

47%40% 37%

AdvocacyGroupSupport Pa9entAdvisoryBoards ProfessionalAdvisoryPanels

CTResultsSummaries HomeNursingNetworks WearableDevices

PercentofCompanies

Source: Tufts CSDD, 2017 (N=38 sponsor and CRO companies)

PercentofCompanies

#Patients2018

StudyVolunteerReadinessforClinicalResearchandClinicalCaretoBemerIntegrate

Percent‘Somewhat’/’Very’ Overall EU NA SA APAC

Howvaluablewoulditbetolearnaboutclinicalresearchstudyop9onsfromyourHCPduringregularofficevisits

88% 84% 93% 92% 83%

Howconvenientwoulditbetohaveclinicalresearchstudyproceduresperformedduringregulardoctor’svisits?

91% 87% 93% 93% 86%

#Patients2018

Summary •  Overallpublicandpa9entattudes,percep9onsandexperiencesconsistentwith

paststudies;probingtoiden9fyunderlyingissuesandopportuni9es1.   Whereshouldoureffortstoimproveawarenessandraiseclinicaltrialliteracy

focus?

•  Personalrelevanceandconnec9onwithclinicaltrials•  Apprecia9onforthegivofpar9cipa9on

2.   Whereispa9entengagementbeingmosthindered/limited?

•  HCPsasfacilitatorsofengagement•  Par9cipa9onBurden•  PlainLanguageTrialResultsDisclosure

#Patients2018

KenGetzFounderandChairman,CISCRP

Director,SponsoredResearchPrograms,AssociateProfessorTuvsCSDD,TuvsSchoolofMedicine

617-636-3487,Kenneth.getz@tuvs.edu

Q&AandThankYouAgain!