Unequal Burden of Disease, Unequal Participation in Clinical Trials: Solutions from African American and Latino Community Members
| Autor: | Daniel W. Smith, Marvella E. Ford, Barbara C. Tilley, Laura A. Siminoff, Arch G. Mainous, Elisabeth Pickelsimer, Vanessa A. Diaz, Melanie Jefferson, Lea H. Soderstrom |
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| Rok vydání: | 2013 |
| Předmět: |
Gerontology
Health (social science) Research Subjects South Carolina Ethnic group Health care Humans Minority Health Qualitative Research Aged Aged 80 and over Clinical Trials as Topic Social work business.industry Cultural Diversity Health Status Disparities Hispanic or Latino Articles Focus Groups Middle Aged Focus group Health equity Black or African American Clinical trial Psychology business Attitude to Health Qualitative research Patient education |
| Zdroj: | Health & Social Work. 38:29-38 |
| ISSN: | 1545-6854 0360-7283 |
| DOI: | 10.1093/hsw/hlt001 |
| Popis: | Exciting new medical therapies for a number of diseases that disproportionately affect African Americans and Latinos are currently being developed and tested in clinical trials (Robinson & Trochim, 2007). Despite bearing an unequal burden of disease, African Americans and Latinos continue to be underrepresented in clinical trials research, even though the National Institutes of Health Revitalization Act of 1993 (P.L. 103-43) stipulating the participation of women and minority groups in research was created in 1993 and updated in 2001 (Pinsky et al., 2008). Insufficient representation of racially and ethnically diverse groups and women in clinical trials results in inequitable distribution of the risks and benefits of research participation and reduces the generalizability of trial results (Pinsky et al., 2008). Health disparities in the United States could be reduced if targeted therapies were discovered that work equally well in all populations or work especially well in members of affected racial and ethnic groups. The purpose of this study was to use qualitative data obtained via focus groups with African American and Latino adults ages 50 years and older to elicit potential solutions to the problem of low rates of participation of such populations in clinical trials research. The conceptual framework of the study was based on the Institute of Medicine (IOM) report Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare (Smedley & Nelson, 2003), which identified three factors as major sources of racial and ethnic disparities in health outcomes: (1) characteristics of health care systems, (2) perceptions of and actual interactions with health care providers, and (3) preferences and attitudes of patients. We applied IOM's conceptual framework to the arena of disparities in recruitment of diverse populations to clinical trials research by revising the wording of the IOM framework to refer to clinical trials research instead of to health care disparities. For example, in the framework, we replaced “health care systems” with “health care systems and study processes,” “health care providers” with “researchers,” and “patients” with “potential trial participants.” The revised framework is depicted in Figure Figure11 and is described in the following sections. The conceptual framework is related to the systems approach in the field of social work, in which clients and their needs are related to a multilevel model of resources, systems, and institutions (Darnell, 2007; NASW, 2008). Figure 1: Model Framework of Multilevel Factors Affecting Decision to Participate in a Clinical Trial |
| Databáze: | OpenAIRE |
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