Your voice can help make metastatic breast cancer clinical trials more diverse.
become: Black Experience of Clinical Trials and Opportunities for Meaningful Engagement
The data tells a disturbing story. Black women are 40% more likely to die of metastatic breast cancer (MBC) than white women and twice as likely to be diagnosed with triple-negative breast cancer, which can have lower survival rates. Clinical trials help improve outcomes and survival, but less than 5% of all people with cancer will ever join a clinical trial. And of this small segment, only 6.2% of all clinical trial participants are Black.
How can we ensure Black people are better represented in cancer research? Finding the answer starts with patient voices.
Building on a 2019 project conducted by Marina Kaplan, an epidemiologist who lived with metastatic breast cancer, BECOME is a new research initiative designed to find solutions within the Black community. Using real-life patient input, BECOME looks for practical and actionable ways to make it easier for Black people living with MBC to take part in research trials. Your survey responses will help patients make more knowledgeable decisions, educate doctors on how to support patients in joining trials, and help researchers understand and design clinical trials in a way that encourages Black participation.
Representation in research matters.
You can help.
“As a metastatic breast cancer patient, I don’t want my daughter to go through what I’ve experienced. I want to understand barriers to clinical trials for the Black community, so we can find answers on why Black men and women with MBC are dying at a faster rate.”
– Stephanie Walker, BECOME Project Lead
Take the BECOME Patient Survey
Coming in MID 2021
We will be conducting a survey of MBC patients in the U.S. – with an emphasis on the Black community – to gather thoughts around participating in metastatic breast cancer clinical trials. Are you currently receiving treatment for MBC, or do you know someone who is? Sign up now to be notified when the survey launches, and share your insight and impressions of clinical trials.
Black people are impacted by MBC at higher rates, but are rarely part of clinical research trials for new treatments.
about the project
In memoriam: Marina Pomare Kaplan, 1962-2020
In 2019, epidemiologist and patient advocate Marina Kaplan presented a poster at SABCS on increasing participation in clinical trials: patient-driven solutions. Only 8.87% of survey respondents were Black, reflecting the current rate of Black clinical trial participation of about 6.2%.
Today, patient advocate Stephanie Walker and a diverse project team are carrying on Marina’s desire to conduct deeper research in the Black community on barriers to clinical trial participation by partnering with MBCA to launch the BECOME project. This patient-focused initiative reflects our belief that what impacts one, impacts all.
COVID-19’s impact and the success of Black Lives Matter makes now the right time for collaborative solutions. BECOME will help our members better educate patients and clinicians, and impact clinical trial design and recruitment to increase participation and representation of Black patients with MBC.
Learn more about the preparatory research that paved the way for the BECOME project.
Frequently Asked Questions
The BECOME project was designed by research professionals, Alliance members, and patients living with MBC around the goal of listening first to patient voices – with input from scientists and oncologists – to find solutions for increasing Black participation in clinical trials. The work plan for the project includes:
A literature review of prior research papers that look at the barriers to Black patient participation in cancer clinical trials
In-depth interviews with Black patients and healthcare professionals on what they see as barriers to Black people participating in clinical trials
A survey of MBC patients that aims to better understand the numbers behind the Black community’s understanding of, or experience with, clinical trials.
A final report that summarizes the research results, and recommends key solutions that pharma and organizations can put into action to make it easier for Black people to participate in clinical trials
Planning for BECOME began in October 2020. In-depth interviews are scheduled to take place in Winter 2020-21. The patient survey will be released in early 2021, and project findings are expected in Spring 2021.
If you are a metastatic breast cancer patient, take the survey to share your perception of clinical trials – whether or not you’ve ever taken part in one.
You can also support this project by spreading the word. Do you know an MBC patient, or work with cancer patients? Share the link to this page to let people know about this important research effort, or share a paper copy of the BECOME patient survey when it becomes available.
MBC patients of all racial and ethnic backgrounds are invited to take the survey. While we plan to collect a large number of responses from Black patients, given the pandemic and the large increase in public awareness of racism in 2020, we also need new data from other patient communities so we can compare responses from a single point in time.
It should take no longer than 15 minutes to complete the survey.
All survey responses are anonymous. Your name and contact information are NOT required. If you would like to be contacted to share your story with a larger audience as a patient advocate, you may choose to share that information confidentially.
MBC patients can choose to either take the survey online; or complete a paper version of the survey, and return it by mail. Check back for links and more information once the survey launches.
Support the Project
Are you a clinician, community leader or patient advocate who would like to support outreach efforts for the BECOME research initiative? Contact project lead Stephanie Walker to learn how to get involved in improving access and diversity in MBC clinical trials.