An examination of community members', researchers' and health professionals' perceptions of barriers to minority participation in medical research: An application of concept mapping
An examination of community members', researchers' and health professionals' perceptions of barriers to minority participation in medical research: An application of concept mapping
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DOI：
10.1080/13557850701616987
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发表时间：
2007-01-01
影响因子：
3.1
通讯作者：
Trochim, William M. K.
中科院分区：
文献类型：
--
作者：
Robinson, JaMuir M.;Trochim, William M. K.
Objective.一些最有前途的医疗方法目前正在开发和临床试验中使用。在美国，少数种族/族裔的慢性病发病率高得不成比例。不幸的是，少数族裔参与医学研究的比例很低，原因尚不清楚。这项研究旨在通过对这些障碍的概念化和测量，为目前有关种族/少数民族参与医学研究的具体障碍的知识体系做出贡献。研究参与者包括从国家癌症研究所特殊人群网络获得的便利样本，由专门从事癌症治疗和预防相关研究的从业人员，研究人员和社区成员组成。一个结构化形式的概念映射（Trochim 1989）是在这项研究中使用的方法。概念图绘制过程有三个具体阶段：（1）项目规划-制定项目重点说明和样本选择;（2）构思和结构化;（3）分析和解释。这种方法类似于更正式和结构化的焦点小组方法，涉及收集149个想法和整理70个陈述。对参与者的人口统计数据进行了比较，并以模式匹配的形式呈现。这项研究的结果表明，有两个具体领域可以解决少数群体参与的障碍。第一个领域是研究系统，具体而言，是设计和实施研究的方式，包括少数种族/族裔的转介、招聘和留用。数据表明，招募和保留将有助于解决患者对研究过程的担忧，并减轻对临床试验的恐惧。第二个领域涉及少数民族的看法的研究过程的基础上的历史和个人经验。社区成员自己界定的参与障碍与卫生专业人员对这些障碍的看法似乎存在差异。让少数群体更多地参与医学研究的设计、管理和实施，将有助于减轻对研究过程的负面看法，并有助于增加少数种族/族裔的参与。
Objective. Some of the most promising medical treatments are currently being developed and used in clinical trials. In the US, rates of chronic disease among racial/ethnic minorities are disproportionately high. Unfortunately, the rates of minority participation in medical research are low, and the reasons are unclear. This study seeks to contribute to the body of knowledge that is currently available relating to the specific barriers to racial/ethnic minority participation in medical research through the conceptualization and measurement of these barriers.Design. Study participants included a convenience sample obtained from the National Cancer Institute's Special Populations Networks, and consisted of practitioners, researchers and community members who specialize in research related to the treatment and prevention of cancer. A structured form of concept mapping (Trochim 1989) was the methodology used in this study. The concept mapping process has three specific phases: (1) project planning-development of project focus statements and sample selection (2) idea generation and structuring and (3) analysis and interpretation. This method is analogous to a more formalized and structured focus group approach, and involved the gathering of 149 ideas and the sorting of 70 statements. Comparisons across participant demographics were conducted and are presented in the form of pattern matches.Results. The findings of this study suggest that there are two specific areas where barriers to minority participation may be addressed. The first area is the research system, specifically, the manner in which research studies are designed and implemented, including referral, recruitment and retention of racial/ethnic minorities. The data suggest that recruitment and retention will be aided by addressing patient concerns regarding the research process, and assuaging fears about clinical trials. The second area pertains to minority perceptions of the research process based on history and personal experiences.Conclusion. There appears to be a difference in the barriers to participation as defined by community members themselves, and health professionals' perceptions of these barriers. Increased inclusion of minorities in the design, management, and implementation of medical research studies would help mitigate negative perceptions of the research process, and serve to increase participation among racial/ethnic minorities.