Public and Patient Perceptions & Insights Series

1. Public and Patient • Perceptions & Insights Series April 2014

2. Results Review: Rationale • Increasing enterprise-wide interest in engaging study volunteers as partners in clinical research • Inside knowledge, Trust; Ownership/Support; Collaboration • For 5-7 years, no active and regular assessment of public and patient perceptions and experiences • HarrisInteractive (2005); CenterWatch (2005) • CISCRP’s Objectives: • Resume and establish routine assessment • Identify trends and new insights that inform and educate the enterprise on improving public and patient attitudes and experience

3. Methods

4. Methods: Respondent Characteristics

5. Response Size by Respondent Experience Generally a 3-percentage point difference between values is significant at the p<.05 level

6. Key Insights Generally consistent attitudes with past polls; some areas of notable and significant improvement in public attitudes and perceptions Significant age-related and regional differences observed among public and participants Losing high proportion of participants ineligible for one clinical trial who may qualify for another Wide differences found between those who drop-out versus those who complete their clinical trials

7. General Attitudes • High willingness to participate; consistent with past survey results • High percentage believes that they have a good general understanding of clinical research • General understanding appears to be tenuous and superficial • Trust in the research enterprise, public perceptions of study volunteer motivation, and public attitudes about safety have all improved • Wide differences by region and age group

8. How willing are you (‘Very’/‘Somewhat’) to Participate in a Clinical Research Study? Public Perceptions Base: All Respondents

9. Public Perceptions How willing are you (‘Very’/‘Somewhat’) to Participate in a Clinical Research Study? Percent of Respondents

10. Evolving Public Perceptions Source: CISCRP, 2013 Perceptions & Insights Study; N=5,701 Respondents

11. Public Perceptions How would you rate your general knowledge about clinical research? Base: All Respondents

12. Top Perceived Benefits and Risks

13. Top Information Sources

14. Preferred vs. Actual Information Sources Preferred and actual sources for information about clinical research Base: All Respondents

15. Top Sources for Information about clinical research REGION Base: All Respondents

16. What social media have you used to learn about clinical research? REGION GENDER Base: All Respondents

17. Who did you consult with before choosing to participate in a clinical research study? REGION GENDER Base: All Respondents

18. Preferred Screening Method Base: All Respondents

19. Top Reasons for Not Participating Base: Has Not Participated/Not Willing to Participate

20. Reasons why you did not qualify for the study? REGION GENDER Base: Wanted to Participate But Did Not Qualify

21. Losing Ineligible Volunteers What did you do after finding out that you did not qualify for a clinical research study? Base: Volunteers Who Wanted to Participate But Did Not Qualify (N=2,647);

22. Losing Ineligible Volunteers What did you do after finding out that you didn’t qualify for a clinical research study? REGION GENDER Percent select Base: Wanted to Participate But Did Not Qualify

23. How important were the following factors in influencing your decision to participate? Percent rate ‘Somewhat/Very Important’ REGION GENDER Base: Have Participated

24. Participant Experiences Percent of Respondents Base: Have Participated

25. How difficult was it to understand the informed consent form?(Comparisons with Past Surveys)

26. How difficult was it to understand the informed consent form? REGION GENDER Base: Have Participated

27. After reading the informed consent form, I was ‘much more’/’somewhat more’ willing to participate Participant Experience Base: All Respondents

28. Participant Experiences Satisfaction that all questions answered after informed consent form review AGE Base: Have Participated

29. What most motivated you to continue participating in your clinical research study? REGION GENDER Base: Completed Participation

30. Who most motivated you to stay in your study? REGION GENDER Base: Completed Participation

31. Participant Experiences • How well did your study meet your expectations? Base: Did Not Complete Participation

32. Participant Experiences • Would you consider participating in another clinical research study in the future? • (percent answer ‘yes’) Base: All Respondents

33. A Closer Look at Participants who Dropped Out

34. Next Steps • Disseminating and discussing study findings • Five Summary reports developed for • Research professional community • National Library of Education; HHS • Peer-review and trade publications • ACRP Monitor (April 2014)

35. Ken Getz Founder and Chairman, CISCRP 617-725-2750, kengetz@ciscrp.org Director, Sponsored Research Programs, Associate Professor Tufts CSDD, Tufts School of Medicine 617-636-3487, Kenneth.getz@tufts.edu Q&A and Thank You!