In an effort to reduce cancer health disparities among Asian Americans, UC Davis Comprehensive Cancer Center now offers individual, in-language education and culturally sensitive materials for every Asian American cancer patient.
New brochures and 5-minute videos were debuted during the National Minority Cancer Awareness Week in April. These were designed to inform Asian Americans about the importance of engaging in cancer research. The educational efforts also are part of the Asian American Cancer Education Study (AACES), a UC Davis program aimed at increasing awareness of clinical trials and the importance of donation of biospecimens such as blood, saliva, or tissue.
Asian Americans Underrepresented in Research
Asian Americans are consistently underrepresented in cancer research. Studies show that language barriers, mistrust of the medical system, and cultural differences often create misunderstandings about the nature and purpose of clinical trials and biospecimen donation, discouraging participation.
“Asian-Americans are the only racial group for whom cancer is the leading cause of death, so we are highly motivated to increase their involvement,” said Professor Moon S. Chen, Jr, PhD, MPH, the cancer center’s Associate Director for Cancer Control.
UC Davis researchers have found that less than 5% of all clinical trials participants in the United States include minorities, less than 2% of clinical cancer research studies focus on non-white ethnic or racial groups, and biospecimen collection among diverse populations lags far behind that of non-Hispanic whites.
Ethnically Specific Outreach
The Asian American Network for Cancer Awareness and Training (AANCART), headquartered at the UC Davis Comprehensive Cancer Center, developed the brochures and DVDs based on extensive research using ethnically specific community outreach programs in Honolulu, Los Angeles, Sacramento, and San Francisco. Through community focus groups and surveys conducted in Vietnamese, Chinese, Korean, Tagalog, and Hmong, AANCART sought to understand existing cultural barriers and misconceptions about participation in cancer research. They found many causes of confusion, from pervasive cultural beliefs to language problems, such as inaccurate translation of certain terms and phrases.
“There are a lot of myths within Asian communities,” said Angela Sun, PhD, who oversees education outreach activities for AANCART and developed the clinical trials materials. “It’s critical that we educate our community on the importance of participating in cancer research in a culturally appropriate way.”
Research revealed many Asian American cancer patients hesitated to participate in clinical trials because they believed if they were placed into the control group, their regular treatment would end. To address this concern, AANCART tailored the materials by explaining how trials are conducted to assure patients that proper cancer treatment would continue.
Additionally, Asian American patients commonly opted out of participation because they believed they would be treated as mere test subjects. To counter this perception, AANCART focused on the positive impact of participation, specifically highlighting participants’ key role in helping to advance discovery of effective cancer treatments for other Asian Americans. Changing the language of the brochures on clinical trials from the English version, “I can help find new treatments for cancer,” to “We can help find new treatments for cancer” emphasizes the collectivistic view of Asian American cultures.
To understand additional barriers, AANCART team members also interviewed physicians.
“We learned that physicians want to approach patients, but language and culture barriers hindered effective patient/provider communication,” said Julie Dang, MPH, CHES, Administrative Core Director at AANCART. The one-on-one educational sessions with patients provide detailed information about research opportunities. Patients eligible to participate in a trial after discussing it with their doctor are then assigned a bilingual “patient navigator” who helps them through every step of the clinical trial.
“Asian Americans’ participation in cancer research is important both for their benefit and to help scientists develop better cancer drugs and protocols for future generations,” said Dr. Chen. He added that biospecimen collection to obtain appropriate genetic material is critical.
Additional information is available at www.aancart.org. ■