1. Senior Manager, Development & Community Engagement
INSIGHTS ON EFFECTIVE COMMUNICATION & OUTREACH AMONG PATIENTS AND ADVOCACY GROUPS
Ellyn Getz
Senior Manager, Development & Community Engagement
x320

2. OBJECTIVES
Highlight key success factors and challenges of community engagement activity
Examine one of CISCRP’s educational and outreach initiatives and how key learnings can be applied to new initiatives

3. AGENDA Why Awareness Campaigns Often Fail General Principles
CISCRP Overview
AWARE for All
Goals & Program Format
Program Draws
Outcome Measures
Local Outreach Efforts
Conclusion
AWARE for All – Houston 2014

4. WHY AWARENESS PROGRAMS TYPICALLY FAIL
Not executed well
Too insular; fail to secure critical stakeholders
Poor expectation setting and lack of mutual trust
Lack continuity
Short-term implementation; insufficient support
Not integrated into broader enterprise and process
Fail to offer adequate incentive
Questionable ROI; lack mandate

5. GENERAL PRINCIPLES Respectful and Builds/Preserves Trust Inclusive
Relevant
Transparent
Customized
Demographically sensitive
Convenient
Inclusive
Mix of local and national visibility and engagement
Integrated into broader CR and HC enterprises
Carefully defined and consensus-based ROI expectations
Measured and communicated

6. INTRODUCTION TO CISCRP
The Center for Information & Study on Clinical Research Participation
Boston-based, independent nonprofit organization
Dedicated to engaging the public and patients as partners in the clinical research process
Offers programs designed to assist clinical research stakeholders in understanding public & patient attitudes in research
Cultivates extensive relationships with patient communities and advocacy groups
Organization website:

7. Access, Input, Network of Support
A MODEL OF ENGAGEMENT
MODEL OF ENGAGEMENT
CONNECT Community of Participants and Ambassadors
EDUCATE General Education and Awareness
ENABLE
Access, Input, Network of Support
Affiliation initiatives/Alumni Programs
Post Trial Communication
Post Trial assessment
Volunteer Ambassadors
ENGAGEMENT
Site/CTSA Support
HC Provider Education
Pharmacy-directed education
‘Voice of the Patient’
Advisory Boards
Medical Community Outreach
Search Clinical Trials
ENGAGEMENT
AWARE for All
‘Medical Heroes’ PSA
Media Outreach
Science Museum Exhibit
Educational Outreach
Speakers Bureau
Legislation
Gift of Participation
CISCRP.ORG

8. COMMUNICATING TRIAL RESULTS

9. Ongoing Communications
COMMUNICATING TRIAL RESULTS: PROCESS
Informed
Consent
Last Visit
Reminders Every 6 Months
Trial Results Posted to Public Registry
Set
Expectations
Thank
Volunteers
Ongoing Communications
Report Results
Set patient expectations from the point of informed consent.
Show patients they won’t be forgotten or abandoned. Provide ways to stay engaged after the last visit
Investigative sites are at the heart of the relationship the research enterprise has with patients

10. PATIENT ADVISORY BOARDS
Provide unprecedented insight into improving:
study feasibility
recruitment and retention
in understanding patient receptivity to new practices and technology solutions
Key areas of focus
Study design elements
Schedule of assessment feasibility
Branding and study positioning communication
Patient recruitment promotional messages
Clinical trial medicine kit design and administration
New technology solutions 

11. PABS: PANEL & STRUCTURE
Composition: 6-8 panel members, representative group of patients not currently enrolled in a trial
Timing: In-person 3-4 hour mid-week meeting
Location: major metropolitan area, CISCRP conducts PABs globally
Frequency: Single meeting or an ongoing series of meetings
Collaboration: patient advocacy group involvement
Assistance identifying and engaging panel members
Co-moderation

12. 2 4 7 PABS: SELECTED IMPACT MEASURES
The typical panel review of a protocol results in an average of:
changes to the schedule of visits and assessments 2
changes to the informed consent form 4
changes to the study positioning and communication materials 7
Reports drawn from 9 of the most recent advisory boards conducted

13. AMPLIFYING THE PATIENT VOICE: ROUNDTABLES
CISCRP conducts research studies to understand volunteer perceptions, motivations and experiences within clinical research.
To support these custom research projects, CISCRP gathers secondary data, develops and implements surveys, and conducts interviews and focus groups.
2.5-hour interactive forum to discuss the results of CISCRP’s new study assessing public and patient attitudes and perceptions about clinical research

14. EDUCATIONAL RESOURCES
Educational Tools include brochures, posters, videos, books
Cover a wide range of topics for research participants, in culturally sensitive 6th to 8th grade reading level and are translated into
two-dozen languages
License content for websites
Customize: add your logo to brochures, videos or add a custom
foreword to Gift of Participation and distribute an electronic copy

15. EDUCATIONAL RESOURCES: CONTENT LICENSING
Right to use, reproduce, and re-invent the following electronic educational content:
CISCRP Web-based Education Center
Educational DVD Series – digital files for health portal
The Gift of Participation 2nd Edition e-book
Interactive ‘Speak Out, Speak Smart’ Videos
CISCRP Clinical Research Facts & Figures
Study Volunteer Bill of Rights

16. SEARCH CLINICAL TRIALS: FREE SERVICE
CISCRP staff manually searches for relevant trials on behalf of patients and their families
Performs over 7500 requests annually and provides customized results

17. COMMUNITY ENGAGEMENT INITIATIVE
Background
Flagship, 14-year-old program
Hosted in over 55 major cities with vibrant health centers
Integrated into local health care and clinical research professional communities
Standard, tested program format
Attracts between 300 – 600 attendees

18. AWARE FOR ALL Demonstrated Success Drivers from 2003 - 2016
Community Outreach: 4,655,300 households
Community Partners*: 1,811
Attendees: 16,694
Posters/Postcards distributed: 56,677
Print Ads: 621
Radio/TV Ads & Interviews: 112
Speakers: 492
Exhibitors: 875
Health Screenings: 181
*Includes total number of healthcare facilities, research sites, places of worship, community centers, chapters of patient-advocacy groups, community venues (libraries, hair salons, etc.)
AWARE for All – Boston 2014

19. Research Professional Panel
AWARE FOR ALL
General Structure and Format
5:00PM – 8:00PM: Health Screenings & Exhibits
6:00PM – 6:30PM: Overview Presentation; Surveys
6:30PM – 7:15PM: Research Professional Panel
7:15PM – 7:45PM: Study Participant Panel
7:45PM – 8:00PM: Medical Heroes Appreciation Ceremony & Raffle
Exhibit in Information Alley
Dr. Jonca Bull, Opening Presenter, AWARE – DC 2015
Research Professional Panel
AWARE – DC 2015
Participant Panel
AWARE – DC 2015

20. AWARE FOR ALL Free & open to public Free health screenings
Program Draws
Free & open to public
Free health screenings
Complimentary meal
Educational handbook with helpful resources
Raffle & fun giveaways
Chance to hear from study volunteers about their experiences in studies
Receipt of contact hours / CEUs
Opportunity to interact with community health groups and advocacy organizations
AWARE for All – London 2016

21. AWARE FOR ALL
Measuring Effectiveness
We’ve reached over 4.7 million households through advertising and promotional efforts
2003 – 2016 events have attracted over 17,000 attendees
Program receives extremely high satisfaction ratings in terms of content quality and learning value
Post-program comprehension increases significantly over pre-program levels

22. Attendee Survey Results
AWARE FOR ALL
Selected Impact Measures
Attendee Survey Results
Percentage
Will tell their friends and family about something they learned at the AWARE event
96%
Will consider participating in a clinical trial in the future (compared to 43% pre-program)
92%
Will suggest that their friends or family participate in a clinical trial
91%
Rate program as “excellent and highly informative”
99%
Prior to AWARE know about CR or have participated in a trial
25%

23. Percentage Point Change
AWARE FOR ALL
Pre- & Post-Presentation Comprehension
Question
Pre-Test
Post-Test
Percentage Point Change
What is a clinical trial?
73%
83% 10
What is the role of the PI?
72%
84% 12
What is the role of the IRB?
36%
54% 18
What is the role of the FDA?
78%
86% 8
What is the informed consent process?
66%
80% 14
Why is a placebo used?
58%
87% 29
What is randomization?
48%
57% 9
What are the benefits of clinical trials?
47%
68% 22
What are the risks of clinical trials?
61%
89% 28
N= 12,803 attendees
Dec 2016

24. AWARE FOR ALL
Outreach and Promotion
Promotional toolkit – shared with over 150 research and advocacy groups in every community
Offer cross-promotion of events and resources
Local newspapers, magazines, journals, media
Radio & TV interviews
Community calendars / bulletins
Social Media advertisements, FaceBook community posts
Gubernatorial proclamations, council announcements

25. AWARE FOR ALL “Why did you decide to attend AFA?”
AWARE for All – Chicago 2015
N= 12,803 attendees
2003 – 2016, Results drawn from evaluation surveys and registration

26. Community Stakeholder
AWARE FOR ALL
Key Success Factors
Community Stakeholder
Engagement
Well cultivated planning team
Bilingual presentations
Accessible, community setting
Transportation provided
Involve local advocacy groups, research teams and TV/radio stations
Collaborate with religious community leaders

27. Q&A AND THANK YOU Ellyn Getz, CISCRP EllynGetz@CISCRP.org
x320
AWARE for All – Chicago 2015
AWARE for All – RTP 2015
AWARE for All – Boston 2014