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Recruitment of Hawaiians and Filipinos for clinical trials should address informed consent, research safeguards, and benefits
Ethnic/minority differences in disease rates, medication compliance and response, and morbidity and mortality underscore the need for increased minority participation in clinical trials. To successfully recruit Hawaiians and Filipinos for clinical trials, recruitment campaigns need to improve awareness in those communities of the process of informed consent and research safeguards, as well as the benefits of the research to family and community. That's the conclusion of a study supported in part by the Agency for Healthcare Research and Quality (HS14022).
Researchers conducted 9 focus groups—each with an ethnically matched moderator—of 50 people (27 Filipinos and 23 Hawaiian/Pacific Islanders) in 5 different Hawaiian communities to explore people's feelings, problems, and recommendations regarding medical research. Only 12 percent of focus group participants said that they absolutely would not participate in a clinical study. Most agreed that research is vital. However, Filipinos were more optimistic than Hawaiians about the safety and value of joining a clinical study. Hawaiian groups were more hesitant and fearful.
The most critical recurrent negative theme to emerge from the study was the perception that research is "secretive," and that research participants are not provided with enough information to make an informed decision. Both Hawaiian and Filipino groups said that their participation was contingent on complete disclosure of risks and an explanation of benefits, including potential benefits to the family and/or the larger community. Use of interpreters, reporting study findings back to the community, and provision of better medical facilities to the community were added incentives. Both groups generally agreed on the health problems needing research in their communities: gout, diabetes, obesity, high blood pressure, heart disease, sleep apnea, and asthma.
See "Improving Hawaiian and Filipino involvement in clinical research opportunities: Qualitative findings from Hawaii," by Lisa X. Gollin, Ph.D., Rosanne C. Harrigan, APRN-Rx, Ed.D., M.S., Jose L. Calderon, M.D., and others, in the Autumn 2005 Ethnicity & Disease 15 (Suppl. 5), pp. S5-111-S5-119.
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