A Systematic Review of Barriers and Facilitators to Minority Research Participation Among African Americans, Latinos, Asian Americans, and Pacific Islanders

摘要

To assess the experienced or perceived barriers and facilitators to health research participation for major US racial/ethnic minority populations, we conducted a systematic review of qualitative and quantitative studies from a search on PubMed and Web of Science from January 2000 to December 2011. With 44 articles included in the review, we found distinct and shared barriers and facilitators. Despite different expressions of mistrust, all groups represented in these studies were willing to participate for altruistic reasons embedded in cultural and community priorities. Greater comparative understanding of barriers and facilitators to racial/ethnic minorities’ research participation can improve population-specific recruitment and retention strategies and could better inform future large-scale prospective quantitative and in-depth ethnographic studies. THE IMPORTANCE OF RACIAL and ethnic minority participation in clinical research has been well established including, but not limited to, generalizability of research findings, 1,2 equity in provision of health care, 3,4 and accuracy of ethnicity-specific subgroup analyses. 5,6 Despite a series of national-level initiatives in the past 2 decades from the National Institutes of Health, 7 the Federal Drug Administration (FDA), 8 and the Centers for Medicare and Medicaid Services, 9 racial and ethnic minorities remain underrepresented in clinical research. 10,11 Racial/ethnic minorities constitute more than 30% of the US population, but enrollment by race/ethnicity of National Cancer Institute publicly funded cancer clinical trials (phase I–III treatment studies, January 1, 2003, through June 30, 2005) revealed that they represented less than 18% of clinical trial participants. 12 Evelyn et al. reported that racial/ethnic minorities constituted only 17% of FDA clinical trial participants in 185 studies of new molecular entities over a 5-year period. 13 Several barriers to participation of racial and ethnic minorities in clinical research have been identified for both researchers and participants. For researchers, lack of knowledge about the cultural differences among ethnic minorities can result in ineffective communication strategies about health research at all stages, including recruitment, enrollment, and retention. Because research has historically been conducted by White researchers and has targeted mostly White research participants, the “gold standards” with regard to research processes have tended to include incorrect assumptions about effectiveness when unquestioningly transferred to ethnic minority populations. For example, researchers’ inappropriate use of recruitment strategies among racial/ethnic minority groups that were developed for White participants and lack of knowledge about how to culturally and linguistically adapt recruitment materials have been noted concerns. 1,14,15 Given the paucity of evidence-based strategies and practices in the literature regarding non-White populations, recruitment of minorities can require additional investments of time and resources to learn what methods may work in distinct communities to improve community acceptance of clinical research and thus improve participation. 14,16 Cultural and linguistic adaptation of recruitment strategies may include not only the selection of appropriate venues, methods, and topics of focus when addressing the gaps in knowledge about research among a particular minority group 14,17,18 but also the translation of materials into appropriate languages and the implementation of such strategies by culturally and linguistically competent research staff. 19,20 In addition, many researchers fail to facilitate culturally sensitive and meaningful discussions about informed consent to ensure truly informed choices in the enrollment process 21,22 For example, although obtaining consent from a research participant is often practiced as a 1-time occurrence, research indicates that consent should be considered an ongoing process—a dialogue—rather than a discrete act of choice that takes place in a singular moment in time, thus supporting participants in making informed decisions throughout the trial. 23 Moreover, among many culturally diverse and immigrant populations, it may be important to include families and communities in a dialogue around research participation decisions because individual decisions to participate in research are frequently not independent of family and community involvement, benefits, and costs. 2,24,25 Furthermore, once participants have been recruited and enrolled in studies, research success is more likely if culturally informed retention strategies are used to engage such populations in research. 2,26,27 Some suggested strategies focus on partnering with community organizations, including investigators and staff from the same targeted communities as participants and retaining the same staff and interviewers over time to ensure continuity. 20,28,29 Such efforts can incr