ARRA IMPACT REPORT:
Bioethics Research Infrastructure Initiative
Public Health Burden
Given the current under representation of African Americans, Hispanics, Native Americans, Alaska Natives, Asian Americans, Native Hawaiians, and Pacific Islanders, it is clear that the goal of maximizing the diversity of participants in clinical trials has yet to be fully realized. Without clinical study participants of all races and ethnicities, promising new health interventions cannot be fully evaluated for safety and effectiveness.
Building Trust in Minority Communities
The goal of the Bioethics Research Infrastructure Initiative was to establish nationally-recognized bioethics centers dedicated to fostering greater participation of racial and ethnic minority populations in clinical trials through increased collaboration between academic researchers and minority communities.
With ARRA funding, investigators from the University of Maryland Bioethics Center1 conducted a survey of academic researchers and found that only a subset specifically target racial/ethnic minorities for inclusion and they use a range of tailored recruitment strategies. Findings highlight the need for education and training regarding the importance of minority inclusion and effective recruitment strategies.2 In a national survey of potential minority research participants, investigators found that physician referral and diversity of the recruitment team were important factors in respondent willingness to participate in research. There was also a general preference among respondents to participate in research involving lifestyle changes rather than taking medications or undergoing medical procedures. Results from these surveys were used to develop a community-based curriculum, Enhancing Minority Engagement with Researchers, which has been delivered to a number of community-based and professional organizations.
Culturally Tailored Recruitment Strategies
ARRA funding provided investigators with opportunities to examine the effectiveness of specific recruitment strategies in diverse populations.
- Researchers from Emory University examined the effectiveness of strategies for recruiting and retaining black and Hispanic men who have sex with men (MSM) into online HIV prevention interventions. Findings indicate that Hispanic men are less likely than white men to agree to participate in online prevention studies and enrolled black men are less likely than white men to complete follow-up assessments. Using advertisements displaying race/ethnic-congruent men in online banner advertisements on social networking sites results in increased recruitment rates but not retention rates for black and Hispanic men. Further analyses indicate that rural men who use the Internet to meet sexual partners are more likely to engage in high risk sexual practices than those who do not use the Internet, highlighting the importance Internet-based prevention interventions.3
- Researchers from the Washington Cancer Institute developed a culturally-relevant patient education video for African American men and women diagnosed with cancer. A 15-minute video was developed addressing six documented attitudinal barriers to clinical trial participation among African Americans: ethical misconduct of investigators, poor treatment for being poor or a minority, fear and mistrust of the medical establishment, worry about loss of autonomy, and lack of awareness about clinical trials. The video was pilot tested on 108 African American cancer patients. Patients showed significant improvement in attitudes with respect to all six identified barriers, and 62% of participants who initially said they were not likely to enroll in a clinical trial said they were likely to enroll in a trial after watching the video.4
Contributing NIH Institutes & Centers
- National Institute on Minority Health and Health Disparities (NIMHD)