Though I am very proud of the work we have done and the progress we have made, I am still enormously frustrated by the lack of large-scale change in overcoming barriers to treatment for underserved populations. The mortality rate for all cancers combined is approximately 33% higher in African Americans than in Caucasians, and the evidence shows that African Americans have the lowest five-year survival rates, compared with all other ethnic groups.
Huge disparities remain, with challenges ranging from the basic—such as transportation—to the complex, such as mental health issues and financial inequities. We also continue to struggle with how to engage more African Americans in screening and how to increase African American participation in clinical trials. Currently, the participation rates among African Americans hover at the abysmally low rate of 1.3%.
To address the latter issue, I obtained an NIH grant from American Recovery and Reinvestment Act (ARRA) funding to look at the issue of increasing African American participation in clinical trials. I worked with Deliya Banda, PhD, who obtained her PhD from the University of Maryland while working with me on this project. We tested the efficacy of a 15-minute narrative-based video—“Today’s Truth: Research Brings Hope”—to change the intention to enroll into a clinical trial. It was designed to target six cultural and attitudinal barriers to African American clinical trials participation. These include:
- Fear and distrust of the medical establishment (doctors, scientists, and the government)
- Concern about the ethical conduct of investigators (e.g., Tuskegee Syphilis Study)
- Fear of losing one’s rights by signing a research informed consent document
- Worry that investigators will treat poor or minority patients unfairly (e.g., the patient becomes a guinea pig)
- Loss of privacy
- Lack of knowledge and awareness of clinical trials (e.g., what would be done, what would be expected from them, and what are the expected risks and benefits of the research presented at participant’s comprehension level)
The results of our study were that the patients' likelihood of enrolling in a clinical trial significantly increased post-video, with 34% of the sample showing positive changes in intention. Such simple, effective, patient-level interventions offer promise in increasing African American participation in clinical trials.1
Of course, patient perceptions are only part of the equation when it comes to overcoming health disparities; another is patient-provider communication. With a 2010 grant from Susan G. Komen for the Cure®, we developed a “cultural competency” training module for health care providers. This module addresses breast cancer disparities, common barriers to care, and the six fundamental functions of patient-provider communication: fostering healing relationships, exchanging information, responding to patients’ emotions, managing uncertainty, making informed decisions and enabling patient self-management.
The purpose of this project was to improve the cultural competence of health care providers and evaluate the module’s impact on breast screening and diagnostic and treatment benchmarks, such as lost to follow-up rates and length of time between mammogram, biopsy, and treatment.
Using the cultural competency training modules, we were able to decrease the number of “lost to follow up” and shorten the time to intervention. Also, extremely important, we improved employee satisfaction by 22%. This was done by engaging the staff by providing general education about breast cancer through a breast cancer 101 class, which lasted several hours. This was extremely well-received by the staff who now feel that they are part of the whole process and not just someone to check a patient in or one part of the treatment.
Though we have made inroads in awareness, perception, and communication, collectively as an oncology community, we need to do much more. I am thankful that ASCO has the Advisory Group on Health Disparities working to develop programmatic and policy solutions to reduce disparities in cancer care and outcomes. As oncology professionals, we have a responsibility to improve data collection on disparities and to advocate for sound public policies that increase access for all no matter who they are or where they live.
I extend my thanks to the Health Disparities Working Group for spearheading these important efforts, in particular, Chair Blase Polite, MD, MPP; Chair-Elect Sandra L. Wong, MD, MS; and Immediate Past Chair Beverly Moy, MD, MPH.
For additional reading, please see Dr. Polite’s blog post, “Medicaid Is People Too,” and Dr. Moy’s post, “Cancer Disparities: Scratching the Surface.”
- Banda D, Wang H, Libin A, Swain S. A Pilot Study of a Culturally Targeted Video Intervention to Increase Participation of African American Patients in Cancer Clinical Trials. Oncologist. 2012;17(5):708-14. PMID: 22639112.