Are racial and ethnic minorities less willing to participate in health research
TL;DR: 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.
Abstract: 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.
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TL;DR: 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.
Abstract: 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.
1,023 citations
TL;DR: A comprehensive summation of the major barriers to working with various disadvantaged groups is provided, along with proposed strategies for addressing each of the identified types of barriers.
Abstract: Background
This study aims to review the literature regarding the barriers to sampling, recruitment, participation, and retention of members of socioeconomically disadvantaged groups in health research and strategies for increasing the amount of health research conducted with socially disadvantaged groups.
890 citations
Cites background from "Are racial and ethnic minorities le..."
...Most of the literature reviews (20/31) discussed problems and solutions to recruiting socially disadvantaged populations into health research [14,15,131,132,134-148,156,158]....
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...racial and ethnic minority groups as it was in Caucasian participants [146], suggesting that factors other than participant attitudes or beliefs play a role in limiting health research participation....
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...b Focus on health service participation rather than health research In addition, 31 previous reviews of related literature were identified and summarised in Table 3 [130-158] including two papers which presented both original data as well as a literature review [14,34]....
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...[146] Systematic review with 20 studies with meta-analysis Racial and ethics minorities Participants’ willingness to participate and attitudes towards research Changing attitudes to research versus other pragmatic barriers to research....
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Book•
01 Apr 2010TL;DR: Liamputtong as discussed by the authors provides an in-depth discussion on how to perform qualitative research in cross-cultural contexts with an emphasis on a more ethical, sensible and responsible approach.
Abstract: Cross-cultural research is rife with ethical and methodological challenges but, despite the increased demand for such research, discussions on 'culturally sensitive methodologies' are still largely neglected. Consequently, researchers often find themselves faced with difficulties but lack information on how to deal with them. This text provides an in-depth discussion on how to perform qualitative research in cross-cultural contexts with an emphasis on a more ethical, sensible and responsible approach. Pranee Liamputtong suggests culturally sensitive and appropriate research methods that would work well with cultural groups. She offers thought-provoking perspectives and diverse cultural examples which will be of value to both novice and experienced cross-cultural researchers. Throughout the volume there are references to the excellent work of many cross-cultural researchers who have paved the way in different social and cultural settings.
403 citations
TL;DR: The effect of race and ethnicity on stroke epidemiology, personal beliefs, access to care, response to treatment, and participation in clinical research is described to help identify gaps in knowledge to guide future research.
Abstract: Purpose- Our goal is to describe the effect of race and ethnicity on stroke epidemiology, personal beliefs, access to care, response to treatment, and participation in clinical research. In addition, we seek to determine the state of knowledge on the main factors that may explain disparities in stroke care, with the goal of identifying gaps in knowledge to guide future research. The intended audience includes physicians, nurses, other healthcare professionals, and policy makers.
METHODS: Members of the writing group were appointed by the American Heart Association Stroke Council Scientific Statement Oversight Committee and represent different areas of expertise in relation to racial-ethnic disparities in stroke care. The writing group reviewed the relevant literature, with an emphasis on reports published since 1972. The statement was approved by the writing group; the statement underwent peer review, then was approved by the American Heart Association Science Advisory and Coordinating Committee.
RESULTS: There are limitations in the definitions of racial and ethnic categories currently in use. For the purpose of this statement, we used the racial categories defined by the US federal government: white, black or African American, Asian, American Indian/Alaskan Native, and Native Hawaiian/other Pacific Islander. There are 2 ethnic categories: people of Hispanic/Latino origin or not of Hispanic/Latino origin. There are differences in the distribution of the burden of risk factors, stroke incidence and prevalence, and stroke mortality among different racial and ethnic groups. In addition, there are disparities in stroke care between minority groups compared with whites. These disparities include lack of awareness of stroke symptoms and signs and lack of knowledge about the need for urgent treatment and the causal role of risk factors. There are also differences in attitudes, beliefs, and compliance among minorities compared with whites. Differences in socioeconomic status and insurance coverage, mistrust of the healthcare system, the relatively limited number of providers who are members of minority groups, and system limitations may contribute to disparities in access to or quality of care, which in turn might result in different rates of stroke morbidity and mortality. Cultural and language barriers probably also contribute to some of these disparities. Minorities use emergency medical services systems less, are often delayed in arriving at the emergency department, have longer waiting times in the emergency department, and are less likely to receive thrombolysis for acute ischemic stroke. Although unmeasured factors may play a role in these delays, the presence of bias in the delivery of care cannot be excluded. Minorities have equal access to rehabilitation services, although they experience longer stays and have poorer functional status than whites. Minorities are inadequately treated with both primary and secondary stroke prevention strategies compared with whites. Sparse data exist on racial-ethnic disparities in access to surgical care after intracerebral hemorrhage and subarachnoid hemorrhage. Participation of minorities in clinical research is limited. Barriers to participation in clinical research include beliefs, lack of trust, and limited awareness. Race is a contentious topic in biomedical research because race is not proven to be a surrogate for genetic constitution.
CONCLUSIONS: There are limitations in the current definitions of race and ethnicity. Nevertheless, racial and ethnic disparities in stroke exist and include differences in the biological determinants of disease and disparities throughout the continuum of care, including access to and quality of care. Access to and participation in research is also limited among minority groups. Acknowledging the presence of disparities and understanding the factors that contribute to them are necessary first steps. More research is required to understand these differences and find solution
397 citations
TL;DR: This work explores how making medical research more diverse would aid not only social justice but scientific quality and clinical effectiveness, too.
Abstract: Esteban Gonzalez Burchard and colleagues explore how making medical research more diverse would aid not only social justice but scientific quality and clinical effectiveness, too.
394 citations
References
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TL;DR: This paper examines eight published reviews each reporting results from several related trials in order to evaluate the efficacy of a certain treatment for a specified medical condition and suggests a simple noniterative procedure for characterizing the distribution of treatment effects in a series of studies.
33,234 citations
"Are racial and ethnic minorities le..." refers methods in this paper
..., non-intervention studies, clinical intervention studies, and surgical intervention studies), again using nonHispanic whites as the reference group [32]....
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TL;DR: In patients with cardiogenic shock, emergency revascularization did not significantly reduce overall mortality at 30 days, but after six months there was a significant survival benefit, and earlyRevascularization should be strongly considered for patients with acute myocardial infarction complicated by cardiogenesis.
Abstract: Background The leading cause of death in patients hospitalized for acute myocardial infarction is cardiogenic shock. We conducted a randomized trial to evaluate early revascularization in patients with cardiogenic shock. Methods Patients with shock due to left ventricular failure complicating myocardial infarction were randomly assigned to emergency revascularization (152 patients) or initial medical stabilization (150 patients). Revascularization was accomplished by either coronary-artery bypass grafting or angioplasty. Intraaortic balloon counterpulsation was performed in 86 percent of the patients in both groups. The primary end point was mortality from all causes at 30 days. Six-month survival was a secondary end point. Results The mean (+/-SD) age of the patients was 66+/-10 years, 32 percent were women, and 55 percent had been transferred from other hospitals. The median time to the onset of shock was 5.6 hours after infarction, and most infarcts were anterior in location. Ninety-seven percent of the patients assigned to revascularization underwent early coronary angiography, and 87 percent underwent revascularization; only 2.7 percent of the patients assigned to medical therapy crossed over to early revascularization without clinical indication. Overall mortality at 30 days did not differ significantly between the revascularization and medical-therapy groups (46.7 percent and 56.0 percent, respectively; difference, -9.3 percent; 95 percent confidence interval for the difference, -20.5 to 1.9 percent; P = 0.11). Six-month mortality was lower in the revascularization group than in the medical-therapy group (50.3 percent vs. 63.1 percent, P=0.027). Conclusions In patients with cardiogenic shock, emergency revascularization did not significantly reduce overall mortality at 30 days. However, after six months there was a significant survival benefit. Early revascularization should be strongly considered for patients with acute myocardial infarction complicated by cardiogenic shock. (N Engl J Med 1999;341:625-34.) (C) 1999, Massachusetts Medical Society.
2,481 citations
TL;DR: Although the total number of trial participants increased during the study period, the representation of racial and ethnic minorities decreased and were less likely to enroll in cooperative group cancer trials than were whites, men, and younger patients, respectively.
Abstract: ContextDespite the importance of diversity of cancer trial participants with
regard to race, ethnicity, age, and sex, there is little recent information
about the representation of these groups in clinical trials.ObjectiveTo characterize the representation of racial and ethnic minorities,
the elderly, and women in cancer trials sponsored by the National Cancer Institute.Design, Setting, and PatientsCross-sectional population-based analysis of all participants in therapeutic
nonsurgical National Cancer Institute Clinical Trial Cooperative Group breast,
colorectal, lung, and prostate cancer clinical trials in 2000 through 2002.
In a separate analysis, the ethnic distribution of patients enrolled in 2000
through 2002 was compared with those enrolled in 1996 through 1998, using
logistic regression models to estimate the relative risk ratio of enrollment
for racial and ethnic minorities to that of white patients during these time
periods.Main Outcome MeasureEnrollment fraction, defined as the number of trial enrollees divided
by the estimated US cancer cases in each race and age subgroup.ResultsCancer research participation varied significantly across racial/ethnic
and age groups. Compared with a 1.8% enrollment fraction among white patients,
lower enrollment fractions were noted in Hispanic (1.3%; odds ratio [OR] vs
whites, 0.72; 95% confidence interval [CI], 0.68-0.77; P<.001) and black (1.3%; OR, 0.71; 95% CI, 0.68-0.74; P<.001) patients. There was a strong relationship between age and
enrollment fraction, with trial participants 30 to 64 years of age representing
3.0% of incident cancer patients in that age group, in comparison to 1.3%
of 65- to 74-year-old patients and 0.5% of patients 75 years of age and older.
This inverse relationship between age and trial enrollment fraction was consistent
across racial and ethnic groups. Although the total number of trial participants
increased during our study period, the representation of racial and ethnic
minorities decreased. In comparison to whites, after adjusting for age, cancer
type, and sex, patients enrolled in 2000 through 2002 were 24% less likely
to be black (adjusted relative risk ratio, 0.76; 95% CI, 0.65-0.89; P<.001). Men were more likely than women to enroll in
colorectal cancer trials (enrollment fractions: 2.1% vs 1.6%, respectively;
OR, 1.30; 95% CI, 1.24-1.35; P<.001) and lung
cancer trials (enrollment fractions: 0.9% vs 0.7%, respectively; OR, 1.23;
95% CI, 1.16-1.31; P<.001).ConclusionsEnrollment in cancer trials is low for all patient groups. Racial and
ethnic minorities, women, and the elderly were less likely to enroll in cooperative
group cancer trials than were whites, men, and younger patients, respectively.
The proportion of trial participants who are black has declined in recent
years.
1,823 citations
TL;DR: This paper places the syphilis study within a broader historical and social context to demonstrate that several factors have influenced--and continue to influence--African American's attitudes toward the biomedical community.
Abstract: The Tuskegee Syphilis Study continues to cast its long shadow on the contemporary relationship between African Americans and the biomedical community. Numerous reports have argued that the Tuskegee Syphilis Study is the most important reason why many African Americans distrust the institutions of medicine and public health. Such an interpretation neglects a critical historical point: the mistrust predated public revelations about the Tuskegee study. This paper places the syphilis study within a broader historical and social context to demonstrate that several factors have influenced--and continue to influence--African American's attitudes toward the biomedical community.
1,137 citations
"Are racial and ethnic minorities le..." refers background in this paper
...Many commentators believe that this relative unwillingness traces to past abuses, especially the notorious Tuskegee Syphilis Study [14–18], described as ‘‘the singular reason behind African-American distrust of the institutions of medicine and public health’’ [19]....
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TL;DR: Race remained strongly associated with a higher distrust score and even after controlling for markers of social class, African Americans were less trusting than white Americans.
Abstract: Background: Investigators have voiced concerns that distrust of research and the medical community inpedes successful recruitment of African Americans into clinical research. Objective: To examine possible differences in distrust by race and to determine to what extent other sociodemographic factors explain any racial differences in distrust. Methods: We analyzed data from 527 African American and 382 white respondents of a national telephone survey on participation in clinical research. Our main outcome was a 7-item index of distrust. Results: African American respondents were more likely that white respondents not to trust that their physicians would fully explain research participation (41.7% vs 23.4%,P<.01)and to state that they believed their physicians exposed them to unnecessary risks (45.5% vs 34.8%,P<.01). African American respondents had a significantly higher mean distrust index score than white respondents(3.1 vs 1.8,P<.01). After controlling for other sociodemographic variables in a logistic regression model, race remained strongly associated with a highter distrust score (prevalence odds ratio, 4.7;95% confidence interval,2.9-7.7). Conclusions: Even after controlling for markers of social class, African Americans were less trusting than white Americans. Racial differences in disturst have important implications for investigation as they engage African Americans in research.
935 citations
"Are racial and ethnic minorities le..." refers background in this paper
...Studies suggest that various factors, including historic abuses like the Tuskegee study, may have undermined minority groups’ trust in medical research, as measured by survey questions and focus groups [33,34]....
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