T-21: Measuring the Impact of CISCRP’s AWARE for All program on Clinical Research Literacy in the US
Director, R&D Patient Partnerships
CSL Behring United States
We are interested in measuring the impact that our live, educational program "AWARE for All" is having on clinical research literacy in each community that we visit.
We have been conducting an ongoing pre- and post-presentation assessment associated with US-based live events since 2004. The printed surveys are handed out to members of the public and patient communities, as well as researcher professionals at each AWARE for All event.
Approximately 12,000 surveys have been analyzed since 2004, and the results have shown that these health forum events are having a dramatic impact, particularly among minority communities. A battery of comprehension-oriented questions are presented testing a variety of clinical research terms, such as placebo usage, the role of an IRB, randomized trials, and the importance of diversity. Each variable improved between 20% - 70% at each event. By the DIA Annual Meeting, we'll have conducted some additional AWARE events, and data will be incorporated into the final analysis.
Additionally, the surveys obtain data surrounding audience demographics, previous study participation, effective marketing strategies to engage a diverse community, and interest to share key learnings with family, friends, and healthcare providers after the event. On average, 71% of attendees have never participated in a clinical trial, 60% of attendees come from minority and underserved communities, 97% of attendees share that the event addressed their concerns about clinical research, and 94% express an interest in speaking with their doctor about participation opportunities in the future.
We have found that this free, live educational program model effectively answers questions about clinical research, addresses concerns, and raises awareness about studies conducted locally; and, we have learned that this may be the most effective approach that CISCRP has in increasing clinical research and health literacy. Each event collaborates with over 250 community organizations, who assist in spreading the word about clinical research and share educational content and study-related information with their constituents. We hope to be able to offer more than 5 events each year, expanding to international locations with culturally-relevant content and programming.