BECOME Patient Survey Now Open

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 under 35 are more than twice as likely to get breast cancer than white women, and they die of metastatic breast cancer (MBC) at more than three times the rate.1 But while clinical trials help improve outcomes and survival, Black people represent only 3 to 6% of patients in all cancer clinical trials.2

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.

1Carey K. Anders et. al, Breast Cancer Before Age 40, U.S. National Institute of Health’s National Library of Medicine, June 2009.
2Percentages of Black Patients Enrolled in Cancer Clinical Trials, Excerpted from BECOME Synthesis Report, April 2021.

Take the BECOME Patient Survey
OPEN FOR A LIMITED TIME

  • Help researchers understand how to improve access to clinical trials
  • You do not need to have participated in a trial to take the survey
  • Survey is anonymous
  • Should take around 15 minutes to complete
  • Open to all metastatic breast cancer patients
  • We are especially interested in hearing Black voices

Three Ways to Take the Survey

  1. Take the survey online.
  2. Request a paper copy of the survey be mailed to you by calling (646) 497-2695 or sending an email with your name and address to become@mbcalliance.org.
  3. Download & print the survey. Only surveys received by June 15, 2021 will be included in the analysis. Mail to: BECOME, 4080 Broadway #311, New York, NY 10032.

SEE The Survey FINDINGS

Join the MBC Alliance’s mailing list to get notified of the BECOME project findings when they are published, including actionable ways for healthcare providers and researchers to encourage Black participation in clinical trials.

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

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.

become subcommittee

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:

Planning
A literature review of prior research papers that look at the barriers to Black patient participation in cancer clinical trials

Qualitative Research
In-depth interviews with Black patients and healthcare professionals on what they see as barriers to Black people participating in clinical trials

Quantitative Research
A survey of MBC patients that aims to better understand the numbers behind the Black community’s understanding of, or experience with, clinical trials.

Findings
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 took place in Winter 2020-21. The patient survey was released in May 2021, and project findings are expected in Fall 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.

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 around 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. You can download a paper copy of the survey here, or request a postage-paid survey be mailed to you by calling (646) 497-2695 or sending an email to become@mbcalliance.org with your name and address.

Only surveys received by June 15, 2021 will be included in the analysis. Mail to: BECOME, 4080 Broadway #311, New York, NY 10032.

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.