Increasing Black patient participation in metastatic breast cancer clinical trials: The BECOME (Black Experience of Clinical Trials and Opportunities for Meaningful Engagement) project.

Abstract

1014 Background: Among U.S. racial/ethnic groups, Black people with breast cancer have the highest death rate and shortest survival. Although ̃15% of cancer patients in the U.S. are Black, only 4-6% of clinical trial participants are Black. Only when trial participants reflect the diversity of the general population can oncologists understand how a drug works across subpopulations. The objectives of the BECOME initiative are to understand barriers to trial participation by Black patients with metastatic breast cancer (MBC) and to identify actions to increase participation. Methods: BECOME is sponsored by the Metastatic Breast Cancer Alliance, a consortium of representatives from nonprofit organizations, pharmaceutical/biotech companies, and patient advocates, many of whom are living with MBC. Findings from a literature review and Key Informant interviews informed a survey of U.S. adults living with MBC. Results: Of 424 survey respondents, 102 (24%) self-identified as Black. Black respondents’ trust and satisfaction with their oncology care team were high (> 90%), and 83% of Black respondents were somewhat or very likely to consider trial participation. However, 40% of Black respondents reported no one on their care team had discussed trials. Black respondents’ reasons to not participate in a trial included concerns about side effects (73%) and effectiveness (63%). Black respondents were more likely than non-Black respondents to believe unstudied treatments may be harmful (57% vs 31%). Black respondents were less likely than non-Black respondents to indicate they trust trials (73% vs 91%) and trust that people of all races/ethnicities get fair treatment in trials (32% vs 56%). Black respondents were more likely than non-Black respondents to value receiving trial information from someone with the same racial/ethnic identity (67% vs 10%), who has had breast cancer (73% vs 44%) or MBC (73% vs 51%), or who has been in a trial (72% vs 48%). Black respondents were also more likely to be motivated to participate to ensure people with their racial or ethnic identity will benefit (83% vs 51%). Conclusions: Black patients with MBC are willing to consider participating in clinical trials. Actionable steps to increase Black patient participation include: 1) enhancing awareness about trials by informing patients, increasing education, training healthcare providers to deliver patient-friendly information in an unbiased manner, and providing messaging from people of shared racial/ethnic identity and health experience; 2) building trust through clear communication; 3) addressing concerns about side effects, effectiveness, harm, and fair treatment; and 4) helping patients find and access trials. All stakeholder groups have a role to play in increasing Black patient participation in MBC clinical trials.