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让西班牙裔参与癌症研究的关键步骤:增强与西班牙裔社区合作开展生物样本捐赠的能力

Critical Steps for Engaging Hispanics in Cancer Research: Building Capacity to Enhance Participation in Biospecimen Donation with Hispanic Communities

作者信息

Rodriguez Elisa Marie, Erwin Deborah O.

机构信息

Department of Cancer Prevention and Control, Roswell Park Comprehensive Cancer Center, Buffalo, NY, USA

Abstract

There is a widespread recognition that health disparities impact Hispanics collectively; however, much less is known about the disease risk and outcomes with respect to the heterogeneity of Hispanic subgroups. Community-engaged approaches and strategies to research are essential for reaching these at-risk populations and building trust among community and research partners who serve and care for Hispanics. These methods are not only useful for engaging diverse populations but also useful in elucidating and differentiating nuances within and among Hispanic subgroup characteristics and their perspectives regarding participation in biomedical research. There is a growing body of evidence supporting the use of participatory research methods in studying, developing, and implementing culturally sensitive cancer prevention interventions and strategies among diverse racial/ethnic minority populations. Much of the previous work in this area has addressed program adaptation or cultural tailoring of existing cancer educational programs and materials. However, the adoption of community engaged research approaches in translational or transdisciplinary research are less understood and may have the potential to improve inclusion and representation of Hispanics in biomedical research studies and to shed light on how to create conditions for health and health equity. This chapter describes novel applications of community-based approaches to biobanking and biospecimen research areas to highlight (1) three critical steps for engaging Hispanic communities in cancer research, (2) best practices and scientifically based strategies and considerations for enhancing community engagement in research, and (3) lessons learned.

摘要

人们普遍认识到健康差异对西班牙裔群体产生了集体影响;然而,对于西班牙裔亚群体的异质性所涉及的疾病风险和结果,我们了解得要少得多。社区参与式研究方法和策略对于接触这些高危人群以及在服务和关爱西班牙裔的社区与研究伙伴之间建立信任至关重要。这些方法不仅有助于吸引不同人群参与,还有助于阐明和区分西班牙裔亚群体特征内部及之间的细微差别,以及他们对参与生物医学研究的看法。越来越多的证据支持在不同种族/族裔少数群体中使用参与式研究方法来研究、开发和实施具有文化敏感性的癌症预防干预措施和策略。该领域以前的许多工作都涉及现有癌症教育项目和材料的项目调整或文化定制。然而,在转化研究或跨学科研究中采用社区参与式研究方法的情况鲜为人知,并且可能有潜力提高西班牙裔在生物医学研究中的参与度和代表性,并阐明如何为健康和健康公平创造条件。本章描述了基于社区的方法在生物样本库和生物标本研究领域的新应用,以突出(1)让西班牙裔社区参与癌症研究的三个关键步骤,(2)增强社区参与研究的最佳实践、基于科学的策略和考虑因素,以及(3)经验教训。

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