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让社区成员参与癌症研究:对一个美国国立癌症研究所指定的癌症中心的评估

Engaging community members in cancer research: an assessment of an NCI-designated cancer center.

作者信息

Leader Amy E, Melillo Rebecca J, Greene Quincy, Blanding-Godbolt Joshua, Shimada Ayako, Eischen Christine M, Aplin Andrew E

机构信息

Department of Medical Oncology, Thomas Jefferson University, Philadelphia, PA, USA.

Sidney Kimmel Cancer Center, Thomas Jefferson University, Philadelphia, PA, USA.

出版信息

Cancer Causes Control. 2023 Apr;34(4):307-319. doi: 10.1007/s10552-022-01666-8. Epub 2023 Jan 4.

Abstract

PURPOSE

Despite the importance of engaging community members in research, multiple barriers exist. We conducted a mixed-methods evaluation to understand the opportunities and challenges of engaging community members in basic, clinical, translational, and population science research.

METHODS

We designed a survey and an interview guide based on the constructs of the Consolidated Framework for Implementation Research. Surveys were distributed electronically to all cancer center investigators and interviews were conducted virtually with a select group of basic, clinical, and population science investigators. Survey data (n = 77) were analyzed across all respondents using frequency counts and mean scores; bivariate analyses examined differences in responses by research program affiliation, gender, race, and faculty rank. Interviews (n = 16) were audio recorded, transcribed verbatim, and analyzed using a reflective thematic approach.

RESULTS

There was strong agreement among investigators that "Community engagement in research will help the SKCC address cancer disparities in the catchment area" (M 4.2, SD 0.9) and less agreement with items such as "I know how to find and connect with community members who I can engage in my research" (M 2.5, SD 1.3). Investigators mentioned challenges in communicating complex science to a lay audience but were open to training and workshops to acquire skills needed to integrate community members into their research.

CONCLUSION

Cancer centers should develop and promote training and collaborative opportunities for investigators and community members. Overcoming challenges will lead to more patient- and community-centered cancer research in the future.

摘要

目的

尽管让社区成员参与研究很重要,但仍存在多重障碍。我们进行了一项混合方法评估,以了解让社区成员参与基础、临床、转化和人群科学研究的机遇与挑战。

方法

我们基于实施研究综合框架的构建要素设计了一项调查和一份访谈指南。调查以电子方式分发给所有癌症中心的研究人员,并与一组选定的基础、临床和人群科学研究人员进行了虚拟访谈。使用频数计数和平均分对所有受访者的调查数据(n = 77)进行分析;双变量分析检验了按研究项目隶属关系、性别、种族和教员职级划分的回答差异。访谈(n = 16)进行了录音,逐字转录,并采用反思性主题方法进行分析。

结果

研究人员强烈认同“社区参与研究将有助于SKCC解决集水区的癌症差异问题”(M = 4.2,标准差 = 0.9),而对于“我知道如何找到并联系能参与我研究的社区成员”等项目的认同度较低(M = 2.5,标准差 = 1.3)。研究人员提到在向普通受众传达复杂科学知识方面存在挑战,但愿意参加培训和研讨会以获得将社区成员纳入其研究所需的技能。

结论

癌症中心应为研究人员和社区成员制定并推广培训及合作机会。克服挑战将在未来带来更多以患者和社区为中心的癌症研究。

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