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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Now showing 1 - 9 of 9
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    Compensation for Injured Research Subjects
    (New England Journal of Medicine, 2006) Steinbrook, Robert
    The article discusses compensation options for research subjects who incur injury during medical trials. The author notes two views: those that view compensation to injured participants as an obligation and those that view compensation as not obligatory because volunteers were made aware of possible risks and consented to the study on their own. Also mentioned as topics of debate are the extent and duration of potential coverage of participants that may have been injured as well as determining if an injury is in fact a complication of the study or not.
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    Understanding Clinical Trials
    (2007) UNSPECIFIED
    Choosing 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.
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    Racial under-representation in clinical trials: Consequence, myth, and proposition
    (2008) Ojha, Rohit; Thertulien, Raymond; Fischbach, Lori
    The historical under-representation of Blacks in clinical trials is well-documented. The ethical ramifications of racial under-representation in clinical trials are exacerbated by the epidemiologic and clinical consequences. For example, persistent under-representation undermines generalizability and challenges inferences regarding treatment safety and efficacy for minority races. The potential for such consequences warrants greater racial diversity in clinical trials. However, investigators have assumed that recruiting Blacks for clinical trials is hampered by unwillingness to participate. Recent reports indicate that the perception of unwillingness may be unjustified. An often overlooked aspect is that conventional recruitment strategies may be ineffective for recruiting racial minorities. Public health professionals from all disciplines have the collective capacity to improve racial diversity in clinical trials primarily because of access to minority communities. Public health professionals could facilitate an effort to encourage collaboration between trial centers and community health clinics in predominantly minority settings.
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    Steps still being taken to undo damage of America's Nuremberg
    (1997) Wolinsky, Howard
    The year 1947 was a watershed for medical ethics and medical care. Fifty years ago, the Nuremberg Code, created in response to the atrocities of Nazi medicine, called for the informed consent of participants in human research. That same year, penicillin was recognized as the standard of care for syphilis. Researchers from the U.S. Public Health Service failed to connect these two milestones. They continued to conduct a long-running study in Tuskegee, Alabama, on the course of syphilis in untreated African-American men and chose not to provide penicillin to study participants. Today, some researchers attribute problems in recruiting African Americans for clinical trials, at least in part, to the Tuskegee study.
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    How a City Aims To Give Minorities Better Health Care: Pittsburgh Hopes To Satisfy 2010 Deadline By Using Voices With Street Cred'
    (2002) Martinez, Barbara
    Pittsburgh - The Rev. John Welch paused, dabbing at sweat on his receding hairline. Dapper in a double-breasted tan suit, he stood silent for a moment in the pulpit of the Bidwell United Presbyterian Church here, and then resumed speaking on a new topic. "God wants us to take preventive steps for our health," he exhorted. "Only when we are healthy can we help someone else." Raising his left arem heavenward, the minister said, "Lord, we have beennegligent of what you have entrusted us with." Then he told his followers to get their blood pressure checked right after the service, downstairs in the recreation hall, where nurses were waiting. It wasn't Mr. Welch's idea to lace his sermon with health tips. The move is part of a broad experiment led by the University of Pittsburgh that aims to erase the disparities in health care between the city's whites and blacks by the year 2010.
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    Tuskegee Legacy Discourages Trial Participation by Blacks
    (2008) Gever, John
    African Americans are still suspicious of the clinical research establishment, some 35 years after details of the infamous Tuskegee study of untreated syphilis were revealed, researchers here said. More than twice as many blacks as white believe physicians secretly experiment on patients, reported Neil R. Powe, M.D., M.P.H., and colleagues at Johns Hopkins in the January issue of Medicine. The researchers said this was the first study to quantify different perceptions of risk associated with clinical trials by race. They wanted to explore the difficulty noted by many earlier researchers in enrolling African-American participants in clinical trials.
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    The Use of Family Health Histories to Address Health Disparities in an African American Community
    (2007) Vogel, Kristen J.; Murthy, Vinaya S.; Dudley, Beth; Grubs, Robin E.; Gettig, Elizabeth; Ford, Angela; Thomas, Stephen B.
    African Americans continue to suffer from health disparities. The Center for Minority Health (CMH) within the University of Pittsburgh has the mission to eliminate racial and ethnic health disparities. CMH has designed and implemented the Family Health History (FHH) Initiative. The FHH Initiative places geneticcounseling graduate students in the African American community to provide risk assessments and emphasize the importance of family history as it pertains to disease prevention. The FHH Initiative also allows participants to enroll into the Minority Research Recruitment Database (MRRD). This enables CMH to alert individuals to available research participation opportunities. In the first year of this program, 225 African Americans completed their family health histories. More than 60% of individuals enrolled in the MRRD. The authors report their initial successes and challenges of an initiative that incorporates awareness of family history information, proper screening guidelines, behavior modification recommendations, and support for participation in clinical research.
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    Should research samples reflect the diversity of the population?
    (2004) Allmark, P
    Recent research governance documents say that the body of research evidence must reflect population diversity. The response to this needs to be more sophisticated than simply ensuring minorities are present in samples. For quantitative research looking primarily at treatment effects of drugs and devices four suggestions are made. First, identify where the representation of minorities in samples matters—for example, where ethnicity may cause different treatment effects. Second, where the representation of a particular group matters then subgroup analysis of the results will usually be necessary. Third, ensuring representation and subgroup analysis will have costs; deciding on whether such representation is worthwhile will involve cost benefit analysis. Fourth, the representation of minorities should not be seen as mainly a locality issue. For qualitative research it is argued that the representation of diversity is often important. Given the small samples of many qualitative projects, however, the best way to ensure representation occurs is to allow a proliferation of such research, not to stipulate such representation in samples.
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    Statewide Tuskegee Alliance for Clinical Trials-A Community Coalition to Enhance Minority Participation in Medical Research
    (2001) Fouad, Mona N; Partridge, Edward; Wynn, Theresa; Green, B Lee; Kohler, Connie; Nagy, Steve
    BACKGROUND. Cancer mortality rates for all sites are nearly 2.5 times greater for African-Americans compared with whites. In addition, there are data implying that cancer treatment outcomes for minorities are unfavorable compared with whites. Whether this is due to poor access to health care or a biologic property of malignancies occurring in specific populations remains to be determined. Because of these unknown factors, targeting minorities for clinical trials may contribute toward the reduction of the overall morbidity and mortality associated with specific cancers. METHODS. The current study describes the establishment of a genuine collaborative partnership between the targeted minority community and clinical investigators at the University of Alabama at Birmingham. This partnership was formed for the purpose of identifying strategies that would enhance the accrual and retention of minority participants into current and future cancer prevention and control trials. Focus groups and key informant interviews were conducted to ascertain the community’s perception of participating in clinical trials. RESULTS. The majority of focus group participants were unclear regarding the nature of clinical trials. Participants indicated that they would participate in research studies if they received adequate information regarding the purpose and benefits of the study, and if the charge came from a pastor or physician. Barriers to participation included time commitments, family obligations, whether blood was involved, and past experiences. The majority of the participants indicated that their knowledge of the Tuskegee Syphilis Study did not influence their decision to participate in research. A major outcome of the conference was the formation of the Statewide Tuskegee Alliance Coalition. The planning coalition decided to continue their efforts to work with communities and promote cancer awareness among minorities. After the conference, the coalition conducted several meetings and in July 1998, 1 year after the conference, the coalition selected a chair, co-chair, and a formal name for the organized group. CONCLUSIONS. The planning, development, and implementation of this conference provided a valuable experience for researchers and community members. It was discovered that community involvement in the early phase of this project contributed to its success. Furthermore, the partnership that developed between researchers (academic institutions) and communities successfully provided an infrastructure that supported the interest of both groups.