Black women are vastly underrepresented in clinical research and trials. An analysis of data from the FDA indicates that in trials for 24 of the 31 cancer drugs approved since 2015, fewer than 5 percent of study patients were black. In response to this need, the Black Women’s Health Imperative (BWHI), Stand Up To Cancer, and Friends of Cancer Research propose a phased program to empower black women to participate in and effectively engage with researchers and clinicians in cancer-focused clinical research. The project team’s model, called TEACH: Trained Empowered Advocates for Community Health (Healing), is the team’s effort to address this need through two overarching goals that include: engaging, training, and educating black women cancer patients, advocates, and family members to understand clinical research; and educating and training empowered patient partners on the principles of clinical research to empower black women, with a specific focus on understanding patient-centered outcomes research and comparative effectiveness research.
Using an engaged and culturally relevant approach, the team will achieve the following objectives: organize a cadre of 100 empowered patient partners (EPPs) to help build a suite of patient empowerment tools; culturally adapt a preexisting cancer patient engagement and advocacy curriculum; educate and empower EPPs on the fundamentals of patient-centered outcomes research (PCOR), comparative clinical effectiveness research (CER), and collaborating with cancer researchers; and create a supplemental training program for researchers and clinicians on the appropriate recruitment and respectful treatment of black women in cancer-focused PCOR and CER. The project team anticipates the following outcomes for the TEACH model program:
- Patients and caregivers who are informed about the research process
- Patients and caregivers equipped to partner with clinicians and researchers to help determine the kind of research that is appropriate for them
- Patients and caregivers able to fully engage in all aspects of the research process from conceptualization to development to implementation and follow-up
- Participants in clinical studies who can help improve the likelihood of achieving more widely relevant results
- Scientists and clinicians who understand the value of partnering with patients and caregivers and who can engage them as respected and valued partners
The team also expects to create impact that validates the concerns and experiences of black patients and their caregivers who are engaged in or considering clinical research and provide actionable evidence for researchers on the need for patient partnership in their studies. For this proposal, BWHI has recruited a team of experts on health disparities, patient advocacy, and community program design, including a two-time breast cancer survivor and multiple scientists of color with expertise in health disparities research, community engagement with African Americans, PCOR, and CER. BWHI serves as the lead agency on this project in close partnership with Stand Up To Cancer and Friends of Cancer Research.