Insights from CISCRP’s 2017 Percepons & Insights Study2013 2017 58% 64% 73% 85% 66% 72% 63% 83%...
Transcript of Insights from CISCRP’s 2017 Percepons & Insights Study2013 2017 58% 64% 73% 85% 66% 72% 63% 83%...
#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,[email protected]
Q&AandThankYouAgain!