Insights from CISCRP s 2017 Percep9ons & Insights Study March 2018

Transcription

1 Insights from CISCRP s 2017 Percep9ons & Insights Study March 2018

2 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?

3 CISCRP 2017 P&I Study Methodology Objec9ves: Ques9onnaire Development: Rou9ne periodic monitoring of public, pa9ents and study volunteers Introduce new areas of inquiry for addi9onal insights and future research Global ques9onnaire developed with broad stakeholder input Data Collec9on Period: May 2017 to July 2017 Methodology: Survey distributed online with support from Acurian, Clariness, CureClick, IQVIA, and HealthUnlocked. Final Sample Size: n= 12,427 CISCRP s Research Services Team focusing on improving our understanding of pa2ents and the public Broad, Interna9onal Studies Custom Research Projects Pa9ent Advisory Boards Pa9ent Journey Assessments

4 Respondent Profile 2017 (n=12,427) 2015 (n=12,009) Gender Female Male Other 59% 40% 1% 54% 46% Region North America South America Europe Asia Pacific 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 (top men9ons) White Black Asian 81% 6% 5% 82% 7% 4% Ethnicity (top men9ons) Not Hispanic/La9no Origin Hispanic/La9no Origin 88% 8% 83% 8% Educa9on No School/Primary Edu Only Some/Completed HS Some/Completed College Some/Completed Post-Graduate 2% 24% 58% 16% 2% 24% 61% 13%

5 Self-Reported General Knowledge and Willingness to Par9cipate Percent of Total Who Understand the Term Clinical Research Study Somewhat or Very Well Percent Somewhat or Very Willing to Par9cipate in a Clinical Research Study 84% 82% % 77% 76% 71% 94% 88% 66% 58% % 73% 64% 63% 85% 83% Europe South America AsiaPac NorthAmerica Europe South America AsiaPac NorthAmerica Source: CISCRP, 2013 and 2017; N = 5,701 and N= 10,233 people who have never participated

6 Percep9ons by Race/Ethnicity Percent of Total (Non- Par9cipants; * with Disease; + Past Par9cipants) Willing to Par9cipate (Very, SW) Black White La9n American Asian 77% 80% 75% 53% Not Confident Finding a CT (Not Very, Not at All) 24% 38% 39% 57% Perceive CT as Unsafe (Not Very, Not at All) 9% 8% 9% 21% Don t Trust the Pharmaceu9cal Industry (Not Much, Not at All) 32% 28% 31% 21% Have Been Asked to Par9cipate in a CT* 32% 25% 18% 14% Willing to Par9cipate in Another CT+ (Very, SW) 80% 76% 74% 46%

7 Limle Connec9on and Relevance 84% feel that it is important that they know about clinical research being conducted in their community; but 59% report not knowing where clinical research is conducted 66% can t name an agency that oversees research safety 40% believe that it takes less than 5 years to develop a new medical therapy Source: CISCRP, 2017 Perceptions & Insights Study; N= 10,233 people who have never participated

8 The Impact of Familiarity Non- Par9cipants Past Par9cipant Percent very willing to par9cipate (again) 30% 68% Percent very confident in finding an (another) appropriate clinical trial 18% 46% Percent very comfortable speaking about clinical trials with others 39% 81% Percent who believe that clinical research volunteers make a major contribu9on to public health 16% 96% Source: CISCRP, 2017 Perceptions & Insights Study; N= non-participants; 2,194 participants

9 Establishing Relevance and Connec9on MT Pharmacy 2002 National Newspaper Supplements

10 Enabling Engagement NO 72% Advocacy Group Friend/Family My HCP 32% Research Center 6% 4% Yes 28% 58% Have you ever been asked to par9cipate? Source: CISCRP, 2017 Perceptions & Insights Study N=7,988 with a medical condition If Yes, By Whom?

11 HCPs as Enablers 62% of pa9ents rate their HCP as the top preferred source for informa9on about clinical research 68% feel that it is very important that their HCP is aware of appropriate clinical trials 71% of pa9ents say that they would speak with their physician or nurse prior to deciding to par9cipate 83% of pa9ents consider their physician s recommenda9on a top factor influencing their decision to par9cipate Pa9ents Who Said their HCP was Very Informed about CTs Higher willingness to par9cipate More comfortable discussing and iden9fying clinical study op9ons More likely to view the ICF as very easy to understand Found clinical trial medicine kit instruc9ons easier to understand More likely to report that study staff answered their ques9ons very well Less likely to drop out prematurely More likely to par9cipate again and to recommend clinical trials to others Source: CISCRP, 2017 Perceptions & Insights Study; N= 10,233

12 HCP Referral Attudes and Experience MDs (N=755) Nurses (N=1,255) Received special training on CT in school 40% 45% Amended lecture(s) on CT at society mee9ngs 39% 21% Consider themselves familiar (SW/Very) with CTs 88% 69% Comfortable (SW/Very) providing CT info to pa9ents 88% 63% Comfortable (SW/Very) discussing CT opportuni9es with pa9ents 91% 72% Have referred their pa9ents to clinical trials 60% 17% Median number of pa9ents referred annually 5 2 Median number of pa9ents seen annually 3,100 5,560 Source: Tufts CSDD; Getz K. Examining the Role of HCPs as Patient Engagement Facilitators in Clinical Trials. Clinical Therapeutics. Sept Source: Tufts CSDD 2015

13 Ini9a9ves to increase HCP Engagement Founda9on, Pa9ent Avocacy Group and Trade Associa9on (e.g., ACRP) programs TransCelerate Biopharma and CTTI ini9a9ves CISCRP: AWARE for ALL programs Speakers Bureau for medical communi9es Best prac9ce sugges9ons and HCP materials for Research Center and CTSIs PABs and Pa9ent Journey workshops Lay Language Clinical Trial Results Summaries

14 What did you least like about your par9cipa9on experience? (Top 5 men2ons) Not knowing whether I was getng the inves9ga9onal treatment Par9cipa9on Burden Percent of Total 30% Loca9on of the research center 22% Study visits were too 9me consuming 19% Compensa9on was not enough given study demands 16% Study procedures were too cumbersome 15% Source: CISCRP, 2017: N= 2,849 Patients Who Completed Participation Aver Reviewing the Informed Consent From, what led you to decide NOT to par9cipate Percent of Total Expected burden of par9cipa9on 54% Scien9fic/study risks 25% Lack of sufficient informa9on 14% Concerns about privacy and confiden9ality 7% Source: CISCRP, 2017: N= 94

15 Transparency and Disclosure Post-Par9cipa9on Percent of Total Feel it is Very or SW important to receive a summary of their clinical trial results? Received a summary once the clinical trial ended European 89% 32% What informa9on would you be most interested in receiving aver comple9ng your study? 74% 72% 59% Percent men2oning 49% 46% North American South American 93% 25% 94% 55% Asia-Pacific 96% 56% My individual results High level results summary Informa9on about my treatment group Whether the drug was approved Brand name of the drug Source: CISCRP 2017 P&I Study; N=2,194

16 Top Engagement Ini9a9ves Implemented/ Piloted/Planned % 77% 70% 47% Percent of Companies Percent of Companies 40% 37% Advocacy Group Support Pa9ent Advisory Boards Professional Advisory Panels CT Results Summaries Home Nursing Networks Wearable Devices Source: Tufts CSDD, 2017 (N=38 sponsor and CRO companies)

17 Study Volunteer Readiness for Clinical Research and Clinical Care to Bemer Integrate Percent Somewhat / Very Overall EU NA SA APAC How valuable would it be to learn about clinical research study op9ons from your HCP during regular office visits 88% 84% 93% 92% 83% How convenient would it be to have clinical research study procedures performed during regular doctor s visits? 91% 87% 93% 93% 86%

18 Summary Overall public and pa9ent attudes, percep9ons and experiences consistent with past studies; probing to iden9fy underlying issues and opportuni9es 1. Where should our efforts to improve awareness and raise clinical trial literacy focus? Personal relevance and connec9on with clinical trials Apprecia9on for the giv of par9cipa9on 2. Where is pa9ent engagement being most hindered/limited? HCPs as facilitators of engagement Par9cipa9on Burden Plain Language Trial Results Disclosure

19 Q&A and Thank You Again! Ken Getz Founder and Chairman, CISCRP Director, Sponsored Research Programs, Associate Professor Tuvs CSDD, Tuvs School of Medicine ,