Unequal Burden of Disease, Unequal Participation in Clinical Trials: Solutions from African American and Latino Community Members

Unequal Burden of Disease, Unequal Participation in Clinical Trials: Solutions from African American and Latino Community Members
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DOI:
10.1093/hsw/hlt001
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发表时间:
2013-02-01
影响因子:
1.5
通讯作者:
Tilley, Barbara C.
Tilley, Barbara C.
中科院分区:
法学4区
文献类型:
--
作者:
Ford, Marvella E.;Siminoff, Laura A.;Tilley, Barbara C.

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非裔美国人和拉丁美洲人在临床试验中的代表性不足。这项研究的目的是找出解决非裔美国人和拉丁裔参与障碍的方案。 57 名 50 岁及以上的成年人(32 名非裔美国人,25 名拉丁裔)参加了此次活动。使用了医学研究所的不平等待遇概念框架。在三个县的五个地点进行了六个种族/民族同质焦点小组。确定了小组内的主题和跨领域的主题。 NVIVO程序用于数据分类。数据经过最终编码和共识审查。共享解决方案包括解决成本问题、在社区背景下招募人员、进行社区和个性化患者教育以及共享患者安全信息。参与者一致赞成临床试验导航招募干预措施。针对非裔美国人的解决方案包括使研究团队多样化、认识到过去的研究滥用行为以及增强社区信任。针对拉丁裔的解决方案包括提供低识字率材料、提供讲西班牙语的临床医生和倡导者,以及澄清移民身份既不会被记录也不会阻止参与。非裔美国人和拉丁裔的解决方案反映了他们的文化背景和历史经历。结果表明,制定量身定制的、以障碍为重点的导航干预措施对于提高不同种族和民族人口的参与度非常重要。
African Americans and Latinos are underrepresented in clinical trials. The purpose of this study was to elicit solutions to participation barriers from African Americans and Latinos. Fifty-seven adults (32 African Americans, 25 Latinos) ages 50 years and older participated. The Institute of Medicine's Unequal Treatment conceptual framework was used. Six racially/ethnically homogenous focus groups were conducted at five sites in three counties. Themes within groups and cross-cutting themes were identified. The NVIVO program was used for data classification. The data were reviewed for final coding and consensus. Shared solutions included addressing costs, recruiting in community contexts, conducting community and individualized patient education, and sharing patient safety information. Participants were unanimously in favor of clinical trials navigation recruitment interventions. Solutions specific to African Americans included diversifying research teams, recognizing past research abuses, and increasing community trust. Solutions specific to Latinos included providing low-literacy materials, providing Spanish-speaking clinicians and advocates, and clarifying that immigration status would neither be documented nor prevent participation. Solutions from African Americans and Latinos reflect their cultural backgrounds and historical experiences. The results suggest the importance of developing a tailored, barriers-focused navigation intervention to improve participation among diverse racial and ethnic populations.