2018 HeLa Event Overview
Overview: An Evening with HeLa and the Communities of Color and Clinical Trial Participation – A Call to Action Seminar: February 1st and 2nd, 2018
See “An Evening with HeLa” Program | See “A Call to Action” Seminar Agenda
Why did BACHAC organize these events?
One area that BACHAC has been interested in exploring is clinical trials by highlighting the importance of them and the need for people of color to participate in them. BACHAC was approached about hosting members from Henrietta Lacks’ family to share their story about the impact that the use of her cells in cancer research had on their family as well as the world. With the 2017 airing of The Immortal Life of Henrietta Lacks, starring Oprah Winfrey and airing on HBO, BACHAC saw an opportunity to not only highlight Henrietta’s contribution to medicine and scientific research but to also educate our communities of color about clinical trials and the importance of participating and influencing the emerging trend of personalized medicine.
Highlights of An Evening with HeLa
It was a synergistic evening. First, it was the 1st day of Black History Month; and second, it was held in the Samuel Johnson, Jr. Performing Arts Center at Capuchino High School named after the first Black Superintendent of San Mateo Union High School District. Highlights included:
A forum for two members of Henrietta Lacks’ family where they shared their story and engaged in a Question and Answer session
More than 500 people attended the event
The event was attended by several senior leaders from healthcare, and biopharma and government organizations
Displayed scientific posters focused on people of color and clinical research
Resource Tables featuring relevant information from non-profits, academic institutions, companies (Alzheimer’s Assn, UCSF, 23andme, Janssen, Stanford) were available for guests
Reached 120% of our Sponsorship goals and almost 70% of ticket sales goals
Highlights of Communities of Color and Clinical Trial Participation – A Call Action Seminar
90% of people who registered attended the event
50% percent of attendees returned evaluations
Average overall seminar rating from attendees was 9.49 out of 10
Average rating for Keynote Speaker Dr. Elise D. Cook was 4.9 out of 5
93% said they feel more knowledgeable about clinical trials
Created a forum to acknowledge the mixed history of clinical trials
Heard best practices for engaging people of color in clinical trials
Heard from patients of color who have participated in clinical trials
Presentations from the Event
The History and Overview of Clinical Trials: Mary Ellen Taylor, FDA Health Communications Specialist, Office of Regulatory Affairs, Office of Communications
Bridging the Communication Gap to Engage Patients in Research: Galen Joseph, PhD, University of California San Francisco
Medicineand theRacial Divide: Dr. Marquitta White, M.S., Ph.D., Assistant Professor , Department of Medicine, University of California San Francisco
Increasing Diversity in Cancer Prevention and Research: Elise Cook, MD, MS, Associate Professor, Department of Clinical Cancer Prevention, The University of Texas, M. D. Anderson Cancer Center
bACHAC’s Next Action Steps
BACHAC has made a commitment to develop and engage in action steps, to honor Henrietta’s legacy and make an impact when it comes to clinical trial design, engaging community participation and increasing clinical trial education, etc.
Highlight BACHAC to health care organizations that it has not engaged with before
Follow up and maintain communication with the 4 organizations who have reached out to us to explore how to further engage communities of color in clinical trial research
Post speaker presentations to our website
Post video of the events on our website
Work with community partners to create a clinical trial resource one-pager
Explore organizing a follow up seminar, i.e. ‘HeLa Revisited’
Host a community screening of the HBO film, followed by a Q & A on clinical trials
Host clinical trial speakers at local churches
Embed clinical trial information into existing programming
Explore scientific research and clinical trial focus in the current strategy planning process