Appraising Initiatives to Raise Public and Patient Awareness and Education Ken Getz, CISCRP and Tufts CSDD March 2019

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1 Appraising Initiatives to Raise Public and Patient Awareness and Education Ken Getz, CISCRP and Tufts CSDD March 2019

2 Summary Proliferation of news and entertainment on more frequent and expansive communication media Matching this more challenging environment with new strategies to raise awareness and clinical research literacy Results-to-date are promising as these strategies continue to evolve

3 Agenda Current environment New awareness and educational models and their impact PSAs Live Educational Events Key Takeaways Moving Forward

4 Realities of the Current Environment Dramatic expansion of channels and formats including social and digital media, video streaming More sensationalized and headline grabbing Premium on brevity and shorter length

5 Newspaper Articles Focused Articles in NYT, WSJ and USA Today Little to no prior knowledge about clinical research Negative Neutral or Positive 17 Leaner staff and greater reliance on freelance journalists 13 Deadline driven Pressure to find headlines that will attract traffic and promote sharing

6 Fictional Films and Television Programs

7 Recent Documentary Films Title Release Date Producer Need to Know: Clinical Trials 2011 PBS Mix The Drug Trial: Emergency at the Hospital 2017 BBC Largely Negative First in Human 2017 NIH Neutral The Human Trial 2019 Independent Positive Position

8 Primary Weaknesses Primarily entertainment not education Increasingly sensationalized Primary messages are not customized for diverse audiences Lack personal relevance for large percentage of viewers Minimal to no opportunities for follow-up questions and inquiry

9 Historical National Outreach Campaigns Short-lived Uncoordinated Therapy and company specific Ad agency developed to support medical breakthroughs Not educational No engagement

10 New PhRMA and TransCelerate Initiatives

11 CISCRP Public Service Announcements Primary positioning to engender appreciation for study volunteers and to recognize the importance of their role in advancing public health Attempting to build brand foundations: The Gift of Participation and Medical Heroes Designed with input from patients, advocacy groups and professionals

12 Our 2004 Engagement Campaign Patient designed and then vetted with multi-stakeholders Educational message designed to engender appreciation Relevance and Call-to-Action Single medium Limited budget

13 Our 2007 Medical Heroes Campaign Multi-stakeholder Inputs Multimedia Formats Recognizable Continuity/Longevity Addresses broader benefits of clinical research and the gift of participation Provides a call to action

14 2007 Medical Heroes PSA Impact Greater Pittsburgh Area (Ave. Number of CT Search Requests) Pilot test involving two CNS studies; 30 sites across 18 markets throughout the US Enrollment Rate in 12 Markets with Mass Media Patient Recruitment Ads Only Enrollment Rate in 6 Markets with Mass Media Recruitment Ads in Conjunction with Everyday Heroes Campaign Improvement in Enrollment Rates from Concurrent Ad and Outreach Campaign Use Patient/Month 9.6 Patients/Month 140% Pre-MHs 1-Wk Post 1-Mo Post 2-Mo Post Source: Eli Lilly & Company, 2009

15 2017 Medical Hero to Millions Campaign Similar development to past PSAs Expanded frequency Greater continuity More diverse and expansive use of print, digital and social media channels and content licensing arrangements USA Today Supplement every 6 months 750k print and 1 4 million digital

16 events annually Full-day program with 9-10 breakout sessions Saturdays 3 5 free health screenings Information booths attendees per program 2013 present 4 6 events annually including 1 in Europe 3 hour program held on weekdays free health screenings Larger number of information booths More integrated, expansive multi-media advertising, promotion High investment of time and staff on grassroots organizing attendees

17 Novel Programs Associated with AWARE

18 Results-to-Date High pre- and post- attendee evaluations and nearly all cities request hosting AWARE again All investigative sites report a significant increase in patient inquiries post AWARE Number of impressions averages 2 to 4 million per AWARE city Doubling of average attendance per program with 70% of attendees from minority and underserved communities 40% Increase in online traffic to CISCRP s clinical trial search portal during AWARE months

19 New Awareness and Public Literacy Models Coordinated and branded with higher frequency; continuity; in multi-media formats Designed to: Accommodate individual needs and styles Inform patient health journey and treatment decisions Build confidence and a personal sense of control Enable key stakeholders to facilitate patient engagement Elevate appreciation for study volunteers and the personal relevance of clinical research

20 Looking Ahead Expanded national media outreach formats and channels Establishing media outreach campaign in Europe and Asia Science Museum Initiative Edutainment

21 Ken Getz Founder and Board Chair, CISCRP Director, Sponsored Programs Associate Professor CSDD, Tufts University School of Medicine ,