Minority Health and Health Equity Archive
Permanent URI for this collectionhttp://hdl.handle.net/1903/21769
Welcome to the Minority Health and Health Equity Archive (MHHEA), an electronic archive for digital resource materials in the fields of minority health and health disparities research and policy. It is offered as a no-charge resource to the public, academic scholars and health science researchers interested in the elimination of racial and ethnic health disparities.
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Item Recovering from Research: A No-Fault Proposal to Compensate Injured Research Participants(American Journal of Law & Medicine, 2012-03) Pike, ElizabethNational advisory committees have considered the obligations owed to research participants in the event of research-related injuries. These committees have repeatedly concluded that injured research participants are entitled to compensation for their injuries, that the tort system provides inadequate remedies, and that the United States should adopt no-fault compensation. But because the advisory comm ittees have made no concrete proposals and have taken no steps toward implementing no-fault compensation, the United States continues to rely on the tort system to compensate injured research participants. This Article argues that recent legal developments and a transformation in the global research landscape make maintaining the status quo morally indefensible and practically unsustainable. Recent legal developments exacerbate the longstanding difficulties associated with the tort system as a method of compensation; nearly every injured research participant will have difficulty recovering damages, and certain classes of injured research participants-those in federal research and those abroad-are prevented from recovering altogether, resulting in substantial unfairness. In the past ten years, many of the countries substantially involved in research have mandated systematic compensation. By not mandating compensation, the United States has become a moral outlier and risks having its noncompliant research embargoed by foreign ethics committees, thereby delaying important biomedical advances. This Article examines alternative compensation mechanisms and offers a concrete no-fault compensation proposal built on systems already in place. The proposed system can be implemented in the United States and countries around the world to help harmonize various national compensation systems and to more equitably and effectively make those injured by research whole. [ABSTRACT FROM AUTHOR]Item National Data for Monitoring and Evaluating Racial and Ethnic Health Inequities: Where Do We Go From Here?(2006) Griffith, D. M.; Moy, E.; Reischl, T. M.; Dayton, E.Abstract available at the publisher's web site.Item Using community-based participatory research to ameliorate cancer disparities.(2010) Gehlert, Sarah; Coleman, RobertAlthough much attention has been paid to health disparities in the past decades, interventions to ameliorate disparities have been largely unsuccessful. One reason is that the interventions have not been culturally tailored to the disparity populations whose problems they are meant to address. Community-engaged research has been successful in improving the outcomes of racial and ethnic minority groups and thus has great potential for decreasing between-group health disparities. In this article, the authors argue that a type of community-engaged research, community-based participatory research (CBPR), is particularly useful for social workers doing health disparities research because of its flexibility and degree of community engagement. After providing an overview of community research, the authors define the parameters of CBPR, using their own work in African American and white disparities in breast cancer mortality as an example of its application. Next, they outline the inherent challenges of CBPR to academic and community partnerships. The authors end with suggestions for developing and maintaining successful community and academic partnerships.Item Understanding Clinical Trials(2007) UNSPECIFIEDChoosing to participate in a clinical trial is an important personal decision. The following frequently asked questions provide detailed information about clinical trials. In addition, it is often helpful to talk to a physician, family members, or friends about deciding to join a trial. After identifying some trial options, the next step is to contact the study research staff and ask questions about specific trials.Item Ethics in public health research: protecting human subjects: the role of community advisory boards.(2004) Quinn, Sandra CrouseIncreasingly, researchers grapple with meaningful efforts to involve communities in research, recognizing that communities are distinct from individuals. We also struggle to ensure that individual participants in research are fully protected. Community advisory boards (CABs) offer an opportunity to adopt a relationships paradigm that enables researchers to anticipate and address the context in which communities understand risks and benefits, and individuals give consent. CABs provide a mechanism for community consultation that contributes to protecting communities and fostering meaningful research. Furthermore, CABs can help us to re-create informed consent as a process. It is critical that we conduct research to understand the role of CABs in the informed consent process.Item Normal Human Aging: The Baltimore Longitudinal Study on Aging(NIH Publication, 1984) Shock, Nathan W.; Greulich, Richard C.; Costa, Paul T, Jr.; Andres, Reubin; Lakatta, Edward G.; Arenberg, David; Tobin, Jordan D.Normal Human Aging is an overview of the first 23 years of research findings about the natural course of human aging. The Baltimore Longitudinal Study of Aging was started in 1958 to "trace the effects of aging in humans." The BLSA recruited men aged 17 to 96 and women beginning in 1978 to participate in repeated assessments of health and physical and psychological performance. Visits were every two years over 2 1/2 days.Item Misinformation and misbeliefs in the Tuskegee Study of Untreated Syphilis fuel mistrust in the healthcare system.(2005) White, Robert MThe Tuskegee Study of Untreated Syphilis (TSUS) is an important issue in research, healthcare, ethics and race relations. The assumed consequences of knowledge of this study on the African-American community include mistrust of the healthcare system. In the July 2005 issue of the Journal of the National Medical Association, Brandon, Isaac and LaVeist (the authors), who were at the Center for Health Disparities Solutions, Johns Hopkins Bloomberg School of Public Health, reported the results of black-white differences in awareness of and knowledge about the TSUS and the effect of that awareness and knowledge on medical mistrust. The study surveyed blacks, whites and others in the Baltimore, MD community about their knowledge of and attitudes about the TSUS. The respondents who were aware of the TSUS were asked survey items to assess specific factual information about the TSUS. The respondents who were not aware of the TSUS were read a brief description of the TSUS taken from the CDC website. Both groups were asked if a similar study was possible today. The authors performed a regression analysis of mistrust of medical care based on race, knowledge of the TSUS and demographic variables. The editorial identified and explained challenges in the article, i.e., challenges in calculations, demographic analysis by race, knowledge of TSUS, cultural sensitivity and methodology. The authors miscalculated the "similar proportions" of blacks and whites who were aware of the TSUS; the recalculated proportions, favoring whites, were different than reported by others. There was no demographic analysis by race in their article--also different than other published reports. Most respondents--blacks and whites--who were aware of the TSUS at baseline answered incorrectly the author-selected questions about the TSUS, particularly the fact-based question of whether the TSUS researchers gave syphilis to the men-not dissimilar to one other report. The source for TSUS information (the CDC website) that was used to educate respondents who were not aware of the TSUS at baseline had contradictions, errors and challenges in black history, medical and public health history, and women's studies. The content of what was actually read to respondents was unknown. Proportionally more whites who were not aware of the TSUS but who were read author-selected information about the TSUS believed that a similar study could happen today-a belief and possibly mistrust of medical care that appeared to be induced-compared to whites with prestudy awareness of the TSUS but not read information from the CDC website. Both black groups were not dissimilar from each other. The authors used a survey that measured a race difference in response to a medical event (TSUS) specific to only one racial group (blacks) when there were inclusive examples specific to other groups available. The authors used "Tuskegee" as a single-word sound bite for the TSUS--a misuse that was inappropriate in scientific and research discourse and that may fuel mistrust of medical care. Whether knowledge of the TSUS was a predictor of mistrust of the healthcare system was inconclusive based on the results in the authors' article. The core findings of the article made believing their case difficult. The editorial suggested that bias and misinformation in undertaking, analysis and reporting the study may in itself fuel mistrust in medical care in the community. Because of these challenges, the editorial urged caution with regard to any change in research direction or policy debate based on the results reported in the article.Item Participation in Cancer Clinical Trials: Race-, Sex-, and Age-Based Disparities(2004) Murthy, Vivek H.; Krumholz, Harlan M.; Gross, Cary P.Context Despite 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. Objective To characterize the representation of racial and ethnic minorities, the elderly, and women in cancer trials sponsored by the National Cancer Institute. Design, Setting, and Patients Cross-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 Measure Enrollment fraction, defined as the number of trial enrollees divided by the estimated US cancer cases in each race and age subgroup. Results Cancer 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). Conclusions Enrollment 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.Item Validity of Racial/Ethnic Classifications in Medical Records Data: An Exploratory Study(2003) Moscou, Susan; Anderson, Matthew R.; Kaplan, Judith B.; Valencia, LisaInformation on “race” and “ethnicity” is routinely collected in medical settings and used in research. Yet little is known about how patients are assigned to categories1–6 or the validity of the racial/ethnic data in medical charts and clinical databases.7 We conducted an exploratory study with 2 goals: to learn how racial/ethnic data were collected at 2 primary care clinics affiliated with Montefiore Medical Center, a large urban hospital in New York City, and to assess the accuracy of these data, with self-report as the standard.Item BCHS 2526 Health Disparities Research: Methods and Interventions(2008) Garza, Mary A.; Fryer, Craig S.This course will examine the challenges and methods in the implementation of health disparities research and interventions. It is intended to both complement and expand the knowledge gained in other BCHS courses by focusing specifically on minority/underserved populations. The course will explore readings and foster discussions that will include: ethics and research in minority/underserved communities; issues, barriers and facilitators to engaging minority/underserved communities in health research; examining basic research questions in minority health; understanding the application of research findings to program development; how to integrate theory and research, and issues and challenges of program implementation. An overarching goal is to increase awareness and knowledge of research on minority health, as well as unique issues to consider when engaging in public health research and practice in these communities. The purpose of this class is to introduce basic issues, challenges, and opportunities that are encountered in health disparities research and interventions. Current research and resources from minority health and health disparities literature will provide the background for student assignments.