A special session at SABCS addressed health equity in translational research. Vernal Branch, a breast cancer survivor and patient advocate, described why advocate participation is necessary to promote diversity in trial participation and biospecimen donation. Advocates have the sense of urgency to make a difference and bring a unique perspective to research priorities.
Advocate involvement in the NIEHS Sister Study of causes of breast cancer was instrumental in exceeding the recruitment goal of 50,000 participants, as well as recruiting participants from all 50 states and Puerto Rico who were diverse in ethnicity, age, education, residential setting, and lifestyle. To do this, individuals and mostly non-profit breast cancer organizations went into sororities and union- and faith-based conventions in the community to get people involved in recruiting for the study.
The website with testimonials from women who were enrolled in the study was pivotal because they came from the communities. There was a personal commitment to help find the causes of breast cancer, and the study received a lot of national media attention, including radio, TV, and print. These methods have also been used successfully by (Dr. Susan) Love’s Army of Women and Men, a model for fast-tracking inclusive breast cancer research that includes more than 383,000 members and 300 researchers. The methods are being used to improve the diversity of tissue collection at UNC Lineberger Cancer Center by empowering patients to be partners with researchers.
Vanessa B. Sheppard, PhD, shared experiences in engaging Black women in clinical trials and biospecimen donation. A study at Virginia Commonwealth University showed mailing patients low literacy information on biospecimen collection resulted in a 70% return rate for both Black (62%; n=95) and white women (70%; n=268). Dr. Sheppard thought time spent upfront explaining the study and biospecimen collection was helpful.
Dr. Sheppard asked, “How sincere are we for change?” Researchers should advocate for diversity in all clinical research, have a plan for diversity, and strive for findings to be informative for all. This means evaluating the commitment to diversity and inclusion, including for research teams, as well as determining how to have an ongoing dialog and communication with stakeholders.
Dr. Lederman has no conflicts of interest to report and is a contributor for Doximity.
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