Update
A poster was presented at JADPRO Live 2023 – the Annual Meeting of the Advanced Practitioner Society for Hematology and Oncology (APSHO), highlighting the findings from the Black Wo(Men) Speak Symposium.
8 out of 10 Black people
living with metastatic breast cancer would consider participating in clinical trials.
About the Black Wo(Men) Speak Symposium
The Black Wo(Men) Speak Symposium, presented in conjunction with the 2022 San Antonio Breast Cancer Symposium, shined a light on the urgent need for greater diversity in clinical trials by presenting data gathered in four recent surveys.
Attendees came together to learn steps to dismantle barriers to clinical trial participation, ways to inspire greater trust in the healthcare system, and strategies to ensure access to clinical trials.
Explore the agenda below to:
- Spend some time with the videos captured at the event
- Download the speakers’ slide presentations
- Read more about the research
Hear from the experts, feel the energy, JOIN THE MOVEMENT!
Who
The Black Wo(Men) Speak Symposium was geared toward all stakeholders involved in MBC treatment and research — including patients, caregivers, and advocates, healthcare providers, pharmaceutical and biotech representatives and researchers.
What
The day began with a keynote address followed by a presentation of findings from the four research projects. The afternoon sessions featured speakers and panel discussions aimed at the various stakeholder groups concerned with trials: Pharmaceutical/Biotech Companies, Researchers, Nonprofit Advocate Organizations, Patient/Advocates, and Caregivers.
Agenda
Welcome and Introductions
Dr. Monique Gary, FACS, FSSO
Breast Surgical Oncologist & Medical Director, Cancer Program
Grand View Health/Penn Cancer Network
Christine Benjamin, LMSW
Vice President of Patient Support and Education
SHARE Cancer Support
Chair, Metastatic Breast Cancer Alliance
Featured Keynote
Moving the Needle on Disparities in Breast Cancer
Lola Fayanju, MD, MA, MPHS, FACS
The Helen O. Dickens Presidential Associate Professor
Chief, Division of Breast Surgery
The University of Pennsylvania
Research Methodology and Findings
The Research is Clear: Building Diversity and Access in Clinical Trials for Black Wo(Men) is Crucial
Putting It All Together | What the Research Found
Tisha Felder, PhD, MSW
Associate Professor
The University of South Carolina
The BECOME Project | Metastatic Breast Cancer Alliance
Stephanie Walker, RN
Project Lead
MBC Alliance
Project SOAR | Carrie’s TOUCH
Rev. Tammie Denyse, MCL, MDiv, PhD (Hon)
Co-founder & President
Carrie’s TOUCH
Black Data Matters | TOUCH, The Black Breast Cancer Alliance
Ricki Fairley
CEO & Co-founder
TOUCH, The Black Breast Cancer Alliance
Increasing WOC Representation in Breast Cancer Clinical Trials | For the Breast of Us
Jasmine Dionne Souers
Co-founder, For the Breast of Us
CEO, The Missing Pink Breast Cancer Alliance
How Healthcare Provider Communication Can Impact Clinical Trial Enrollment
Community Health Care Prespective Made Simple: What You Need to Know
Dr. Monique Gary, FACS, FSSO
Breast Surgical Oncologist & Medical Director, Cancer Program
Grand View Health/Penn Cancer Network
The Numbers Don’t Lie: Patient Needs and Expectations
Valarie Worthy, MSN, RN
Patient Navigator Manager
Duke Cancer Institute
Breaking Barriers, Building Trust, and Finding Solutions
Adaeze Nwosu Iheme, MD
Assistant Professor, Department of General Oncology, Division of Cancer Medicine
The University of Texas MD Anderson Cancer Center
Panel Discussion
Dr. Monique Gary
Valarie Worthy
Dr. Ada Iheme
Pharma and Patient Advocacy Collaboration: Strengthening Best Practices
The Advocate Perspective: The Truth About Diversity and Clinical Trials
Maimah Karmo
President and CEO
Tigerlily Foundation
The Role of Patients and Caregivers in Clinical Trial Decisions
Exploring the Role of Nurse Navigators in Clinical Trial Education and Accrual
Emily Gentry, BSN, RN, HON-ONN-CG, OCN
Senior Director of Education and Program Development
The Academy of Oncology Nurse & Patient Navigators (AONN+)
More Reasons Than Tuskegee
Rev. Dr. Tawana Angela Davis, Soul 2 Soul Sisters
Rev. Dr. Tammie Denyse, Carrie’s TOUCH
Marissa Thomas, For the Breast of Us
Emily Gentry, AONN+
Black Men and the Metastatic Breast Cancer Experience
Garry Davis, Retired Business Owner
in conversation with
Dr. Monique Gary
20 Years Later and Black Women are Still Fighting to Survive
Roberta Albany, CEO and Advocate, Cancer in the Know
Sheila Pettiford Bell, MBC Patient and Advocate
Only 36% of Black people
receive as much information as they want about clinical trials.
Partners
Black Wo(Men) Speak shared the work of multiple organizations that conducted research on the need for greater diversity in clinical trials, and current barriers to participation.
Research Summaries
As part of the Black Wo(Men) Speak event, participating organizations provided summaries of their research on diversity in clinical trials. Download these as well as other helpful materials from the organizations whose work was presented at the Symposium.
For the Breast of Us
Carrie’s TOUCH: Project SOAR
MBC Alliance: The BECOME Project
TOUCH, The Black Breast Cancer Alliance: Black Data Matters
For more information about Black Wo(Men) Speak, please contact Project Lead Stephanie Walker at stephanie@mbcalliance.org or Dana Mooney, Manager of Member Engagement for the Alliance at dana@mbcalliance.org
