Addressing community concerns for increasing clinical trial participation among Asian americans

Background: Asian Americans are not taking full advantage of new prevention and treatments options because they may not understand or be offered participation in clinical trials.

Objective: The goal of this study is to provide information on community values and knowledge that improves recruitment and retention of Asian Americans in clinical trials.

Methods: Eights (8) focus groups were conducted (n=103), 2 with Chinese (2 cities), Korean and Vietnamese Americans. One moderator with a translator conducted each group using a standardized guide.

Results: All groups had some members who thought that clinical trial would give hope to those affected by terminal diseases. Majority participants mentioned benefits of contributing to science, future generations and their families. Participants discussed ways to increase participation rates such as: 1) having a doctor's recommendation; 2) wanting a degree of guarantee about the effectiveness of their treatment and the lack of health threatening side effects; and 3) being sick or needing more options for treatment. Few community members thought that cultural or religious beliefs would prevent participating. Every group had participants that were enthusiastic and had reservations about clinical trials.

Conclusions: Clinical trial education for Asian Americans needs to include information about benefits to science and larger community. Potential participants need lay information about risks and benefits for standard and innovative treatment arms in plain language. Health care providers play a pivotal role in recruiting Asian Americans, which may allow subgroup analyses and identify important ethnically specific harms and benefits of new prevention and treatment options.