Moon Chen, PhD
Population Research and Cancer Disparities
UC Davis Comprehensive Cancer Center Sacramento, CA
Asian-Americans are the only racial group for whom cancer is the leading cause of death. Consequently, some Asian-American populations suffer disproportionately from certain types of cancer, including those that are largely preventable.
The UC Davis Comprehensive Cancer Center and the National Cancer Institute (NCI)-funded National Center for Reducing Asian American Cancer Health Disparities are working to address these disparities through programs to boost participation in clinical trials, collect biospecimens, and conduct blood genomics research.
Asian-Americans have extremely low participation rates in cancer clinical trials. Language barriers, mistrust of the medical system, and other cultural dynamics often create misunderstandings about the nature and purpose of cancer trials, discouraging participation and leading to underrepresentation of Asian-Americans.
Troubled by this historic pattern, the NCI-funded National Center for Reducing Asian American Cancer Health Disparities and the UC Davis Comprehensive Cancer Center developed a patient recruitment program called AACES, or Asian-American Cancer Education Study.
The program’s goal is to demystify clinical trials for eligible Asian-American patients and encourage participation. We know it’s important for the evaluation of cancer therapy effectiveness and toxicity, which can vary among different races and ethnicities. Only 10% of clinical trial participants are non-Caucasian.
AACES was developed under the banner of the Asian American Network for Cancer Awareness, Research and Training (AANCART), funded by the NCI with leveraged funding from the National Institute on Minority Health and Health Disparities (NIMHD) for Enhancing Minority Participation in Clinical Trials (EMPaCT), a consortium of five institutions seeking to increase representation of multiple minority groups in cancer trials.
Established in 2000 and headquartered at the UC Davis Comprehensive Cancer Center, AANCART and the affiliated National Center for Reducing Asian American Cancer Health Disparities provide community education and training and conduct cancer health disparities research.
Over the past year, our AANCART outreach team used focus groups to identify barriers to clinical trials participation. We found that many Asian-Americans had no idea what clinical trials are, who pays for them, and what sorts of risks and benefits are involved.
We also learned that language—specifically the imprecise translation of certain terms and phrases from English to Asian languages—also creates confusion about clinical trials. When translated literally into some languages, for example, the word trial created the misimpression that a legal proceeding was involved, a prospect that stirred worry that something had not yet been adequately tested. Because some suspected that clinical trials were about experimentation and that they would become guinea pigs, we worked to find the right scientific terms in the appropriate languages to ensure the meaning was translated accurately for those who don’t understand English.
Beginning this fall, every Asian-American cancer patient seen at the cancer center can have a one-onone educational session with bilingual and bicultural staff about participating and contributing to cancer research opportunities available to them.
With considerable community assistance, we created brochures and a 5-minute DVD in several Asian languages, from Cantonese to Vietnamese, to share with our newly diagnosed patients. Those eligible to participate in a trial after discussing it with their doctor are assigned a bilingual “patient navigator” who helps them through every step of the clinical trial.
Asian-American patients also are given information about biospecimen collection for ongoing cancer health disparities research. Those interested are consented for specimen collection during blood draws or surgeries.