▪ Abstract Our ability, as leaders in public health scholarship and practice, to achieve and measure progress in addressing racial/ethnic disparities in health status and health care is severely constrained by low levels of participation of racial/ethnic minority populations in health-related research. Confining our review to those minority groups federally defined as underrepresented (African Americans/blacks, Latinos/Hispanics, and Native Americans/American Indians), we identified 95 studies published between January 1999 and April 2005 describing methods of increasing minority enrollment and retention in research studies, more than three times the average annual output of scholarly work in this area during the prior 15-year period. Ten themes emerged from the 75 studies that were primarily descriptive. The remaining 20 studies, which directly analyzed the efficacy or effectiveness of recruitment/retention strategies, were examined in detail and provided useful insights related to four of the ten factor...

https://www.annualreviews.org/doi/pdf/10.1146/annurev.publhealth.27.021405.102113

Effective recruitment and retention of minority research participants

Racial and ethnic minorities, older adults, rural residents, and individuals of low socioeconomic status are underrepresented among participants in cancer-related trials. The authors conducted a systematic review to determine the barriers to participation of underrepresented populations in cancer-related trials. Their search included English-language publications that reported original data on the recruitment of underrepresented groups to cancer treatment or prevention trials between 1966 and December 2005 in multiple electronic databases. They also hand-searched titles in 34 journals from January 2003 to December 2005 and they examined reference lists for eligible articles. Titles and abstracts were reviewed to identify relevant studies. Data on barriers to participation were synthesized both qualitatively and based on statistically significant associations with trial enrollment. Of 5257 studies that were cited, 65 studies were eligible for inclusion in the current analysis, including 46 studies on recruitment into cancer therapeutic trials, 15 studies on recruitment into prevention trials, and 4 studies on recruitment into both prevention and treatment trials. Numerous factors were reported as barriers to participation in cancer-related trials. However, only 20 of the studies reported statistically significant associations between hypothesized barriers and enrollment. The available evidence had limitations in quality regarding representativeness, justification of study methods, the reliability and validity of data-collection methods, potential for bias, and data analysis. The results indicated that underrepresented populations face numerous barriers to participation in cancer-related trials. The current systematic review highlighting the literature on recruitment of underrepresented populations to cancer trials and may be used as the evidence base toward developing an agenda for etiologic and intervention research to reduce the disparities in participation in cancer-related trials.

Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review.

Background: It is widely claimed that racial and ethnic minorities, especially in the US,are less willing than non-minority individuals to participate in health research. Yet,there is a paucity of empirical data to substantiate this claim. Methods and Findings: We performed a comprehensive literature search to identify all puublished health research studies that report consent rates by race or ethnicity. We found 20 health research studies that reported consent rates by race or ethnicity. These 20 studies reported the enrollment decisions of over 70,000 individuals for a broad range of research,from interviews to drug treatment to surgical trials. Eighteen of the twenty studies were single-site studies conducted exclusively in the US or multi-site studies where the majority of sites (i.e., at least 2/3) were in the US. Of the remaining two studies, the Concorde study was conducted at 74 sites in the United Kingdom, Ireland, and France, while the Delta study was conducted at 152 sites in Europe and 23 sites in Australia and New Zealand. For the three interview or non-intervention studies, African-Americans had a nonsignificantly lower overall consent rate than non-Hispanic whites (82.2% versus 83.5%; odds ratio [OR] ¼ 0.92; 95% confidence interval [CI] 0.84–1.02). For these same three studies, Hispanics had a nonsignificantly higher overall consent rate than non-Hispanic whites (86.1% versus 83.5%; OR ¼ 1.37; 95% CI 0.94–1.98). For the ten clinical intervention studies, African-Americans’ overall consent rate was nonsignificantly higher than that of non-Hispanic whites (45.3% versus 41.8%; OR¼1.06; 95% CI 0.78–1.45). For these same ten studies, Hispanics had a statistically significant higher overall consent rate than non-Hispanic whites (55.9% versus 41.8%; OR¼1.33; 95% CI 1.08–1.65). For the seven surgery trials, which report all minority groups together, minorities as a group had a nonsignificantly higher overall consent rate than non-Hispanic whites (65.8% versus 47.8%; OR ¼ 1.26; 95% CI 0.89–1.77). Given the preponderance of US sites, the vast majority of these individuals from minority groups were African-Americans or Hispanics from the US. Conclusions We found very small differences in the willingness of minorities, most of whom were African-Americans and Hispanics in the US, to participate in health research compared to non-Hispanic whites. These findings, based on the research enrollment decisions of over 70,000 individuals, the vast majority from the US, suggest that racial and ethnic minorities in the US are as willing as non-Hispanic whites to participate in health research. Hence, efforts to increase minority participation in health research should focus on ensuring access to health research for all groups, rather than changing minority attitudes.

/pdf/are-racial-and-ethnic-minorities-less-willing-to-participate-57b1uw0dry.pdf

Are racial and ethnic minorities less willing to participate in health research

Purpose Older patients are significantly underrepresented in cancer clinical trials. A literature review was undertaken to identify the barriers that impede the accrual of this vulnerable population onto clinical trials and to determine what specific strategies are needed to improve the representation of older patients in research studies. Methods A systematic literature search was undertaken using several different strategies to identify relevant articles. Results Nine of 31 relevant papers from 159 citations were included. Age is a significant barrier to recruitment; only a quarter to one third of potentially eligible older patients are enrolled onto trials. Physicians' perceptions, protocol eligibility criteria with restrictions on comorbid conditions, and functional status to optimize treatment tolerability are the most important reasons resulting in the exclusion of older patients. Other barriers include the lack of social support and the need for extra time and resources to enroll these patients. Co...

Systematic Review of Barriers to the Recruitment of Older Patients With Cancer Onto Clinical Trials

Members of vulnerable populations are underrepresented in research studies. To evaluate and synthesize the evidence regarding interventions to enhance enrollment of vulnerable populations into health research studies. Studies were identified by searching MEDLINE, the Web of Science database, personal sources, hand searching of related journals, and article references. Studies that contained data on recruitment interventions for vulnerable populations (minority, underserved, poor, rural, urban, or inner city) and for which the parent study (study for which recruitment was taking place) was an intervention study were included. A total of 2,648 study titles were screened and 48 articles met inclusion criteria, representing 56 parent studies. Two investigators extracted data from each study. African Americans were the most frequently targeted population (82% of the studies), while 46% targeted Hispanics/Latinos. Many studies assessed 2 or more interventions, including social marketing (82% of studies), community outreach (80%), health system recruitment (52%), and referrals (28%). The methodologic rigor varied substantially. Only 40 studies (71%) incorporated a control group and 21% used statistical analysis to compare interventions. Social marketing, health system, and referral recruitment were each found to be the most successful intervention about 35–45% of the studies in which they were attempted, while community outreach was the most successful intervention in only 2 of 16 studies (13%) in which it was employed. People contacted as a result of social marketing were no less likely to enroll than people contacted through other mechanisms. Further work with greater methodologic rigor is needed to identify evidence-based strategies for increasing minority enrollment in research studies; community outreach, as an isolated strategy, may be less successful than other strategies.

/pdf/recruiting-vulnerable-populations-into-research-a-systematic-67av7bj6kx.pdf

Recruiting Vulnerable Populations into Research: A Systematic Review of Recruitment Interventions

Purpose Using a health services utilization conceptual framework, the purpose of this analysis was to examine race differences in factors predictive of the behavioral intention of older persons to participate in a clinical treatment trial should they have a diagnosis of cancer. In addition, the analysis sought to determine if older African Americans were less likely than Whites to express willingness to participate, given knowledge of the Tuskegee syphilis study and greater fatalistic cancer beliefs. Design and methods Data were drawn from a community-based telephone survey of 216 African Americans and 222 Whites, 50 years of age and older. Results Findings show that willingness to participate was significantly higher among males, persons of younger age, higher incomes, and with nonfatalistic cancer beliefs. Race differences were only apparent for the two significant interactions of race with age and high income. Neither knowledge of the Tuskegee study nor fatalistic cancer beliefs were more important for African Americans than for Whites. Implications Study findings suggest that recruitment strategies need to be tailored to racial differences in factors affecting willingness to participate, particularly those related to age and income level.

/pdf/willingness-to-participate-in-clinical-treatment-research-333sh4jns1.pdf

Meral Topcu

Papers

Willingness to Participate in Clinical Treatment Research Among Older African Americans and Whites