African American participation in health-related research studies: indicators for effective recruitment.

OBJECTIVE: To elucidate factors that influence African American willingness to participate in health-related research studies. METHODS: The African American Alzheimer disease research study group at North Carolina A&T State University designed an in-person questionnaire and surveyed more than 700 African American adults on their willingness to participate in health-related research studies. The questionnaire was distributed and collected in a nonclinical setting during the years 2008 and 2009. This study was approved by the North Carolina A&T State University Institutional Review Board. RESULTS: Of the 733 valid respondents, 16% had previously participated in a health-related research study. Of these, more than 90% were willing to participate again in future research studies. Of the 614 who had never participated in a research study, more than 70% expressed willingness to participate. The majority (75%) of experienced research study participants (RSP) were older than 40 years compared with 45% of non-research study participants. Experienced research participants were also twice as likely to have a college degree compared with non-research study participants. Seventy-three percent of non-research study participants were willing to participate in research studies in the future. The factors that were probable impediments to participation included lack of time and trust. Men with knowledge of the Tuskegee Syphilis Study were 50% less likely to be willing to participate compared with those who had not heard of Tuskegee Syphilis Study. CONCLUSIONS: African Americans are willing to participate in health-related research studies. Several factors such as the appropriate incentives, community trust building, outreach, and community partnership creation are necessary for engaging minority participants. Incorporating factors that target African American enrollment in research design and implementation, such as increased training of minority health ambassadors and African American researchers and public health specialists, are needed to better engage minorities across generations, in research.

Recruiting intergenerational African American males for biomedical research Studies: a major research challenge.

The health and well-being of all individuals, independent of race, ethnicity, or gender, is a significant public health concern. Despite many improvements in the status of minority health, African American males continue to have the highest age-adjusted mortality rate of any race-sex group in the United States. Such disparities are accounted for by deaths from a number of diseases such as diabetes, human immunodeficiency virus (HIV), cancer, and cardiovascular disease, as well as by many historical and present social and cultural constructs that present as obstacles to better health outcomes. Distrust of the medical community, inadequate education, low socioeconomic status, social deprivation, and underutilized primary health care services all contribute to disproportionate health and health care outcomes among African Americans compared to their Caucasian counterparts. Results of clinical research on diseases that disproportionately affect African American males are often limited in their reliability due to common sampling errors existing in the majority of biomedical research studies and clinical trials. There are many reasons for underrepresentation of African American males in clinical trials, including their common recollection and interpretation of relevant historical of biomedical events where minorities were abused or exposed to racial discrimination or racist provocation. In addition, African American males continue to be less educated and more disenfranchised from the majority in society than Caucasian males and females and their African American female counterparts. As such, understanding their perceptions, even in early developmental years, about health and obstacles to involvement in research is important. In an effort to understand perspectives about their level of participation, motivation for participation, impact of education, and engagement in research, this study was designed to explore factors that impact their willingness to participate. Our research suggests that: (1) African American males across all ages are willing to participate in several types of research studies, even those that require human samples; (2) their level of participation is significantly influenced by education level; and (3) their decision to participate in research studies is motivated by civic duty, monetary compensation, and whether they or a relative has had the disease of interest. However, African American males, across all age groups, continue to report a lack of trust as a primary reason for their unwillingness to participate in biomedical research. There is an ongoing need to continue to seek advice, improve communication, and design research studies that garner trust and improve participation among African American males as a targeted underrepresented population. Such communication and dialogues should occur at all age levels of research development to assess. current attitudes and behaviors of African American males around participation.