Download presentation
Presentation is loading. Please wait.
Published byEustacia Wright Modified over 7 years ago
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
Similar presentations
© 2025 SlidePlayer.com. Inc.
All rights reserved.