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一种促进癌症试验招募过程并提高代表性不足人群研究素养的沟通工具的开发。

The Development of a Communication Tool to Facilitate the Cancer Trial Recruitment Process and Increase Research Literacy among Underrepresented Populations.

作者信息

Torres Samantha, de la Riva Erika E, Tom Laura S, Clayman Marla L, Taylor Chirisse, Dong Xinqi, Simon Melissa A

机构信息

Department of Obstetrics and Gynecology, Northwestern University Feinberg School of Medicine, 633 N. St Clair, Suite 1800, Chicago, IL, 60611, USA.

Institute for Public Health and Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.

出版信息

J Cancer Educ. 2015 Dec;30(4):792-8. doi: 10.1007/s13187-015-0818-z.

Abstract

Despite increasing need to boost the recruitment of underrepresented populations into cancer trials and biobanking research, few tools exist for facilitating dialogue between researchers and potential research participants during the recruitment process. In this paper, we describe the initial processes of a user-centered design cycle to develop a standardized research communication tool prototype for enhancing research literacy among individuals from underrepresented populations considering enrollment in cancer research and biobanking studies. We present qualitative feedback and recommendations on the prototype's design and content from potential end users: five clinical trial recruiters and ten potential research participants recruited from an academic medical center. Participants were given the prototype (a set of laminated cards) and were asked to provide feedback about the tool's content, design elements, and word choices during semi-structured, in-person interviews. Results suggest that the prototype was well received by recruiters and patients alike. They favored the simplicity, lay language, and layout of the cards. They also noted areas for improvement, leading to card refinements that included the following: addressing additional topic areas, clarifying research processes, increasing the number of diverse images, and using alternative word choices. Our process for refining user interfaces and iterating content in early phases of design may inform future efforts to develop tools for use in clinical research or biobanking studies to increase research literacy.

摘要

尽管越来越需要促进将代表性不足的人群纳入癌症试验和生物样本库研究,但在招募过程中,促进研究人员与潜在研究参与者之间对话的工具却很少。在本文中,我们描述了以用户为中心的设计周期的初始过程,以开发一种标准化的研究沟通工具原型,以提高考虑参与癌症研究和生物样本库研究的代表性不足人群的研究素养。我们展示了来自潜在最终用户(五名临床试验招募人员和从一所学术医疗中心招募的十名潜在研究参与者)对该原型设计和内容的定性反馈及建议。参与者收到了该原型(一套覆膜卡片),并被要求在半结构化的面对面访谈中就工具的内容、设计元素和用词提供反馈。结果表明,该原型受到了招募人员和患者的一致好评。他们喜欢卡片的简洁性、通俗易懂的语言和布局。他们还指出了需要改进的地方,从而对卡片进行了完善,包括:涵盖更多主题领域、阐明研究流程、增加不同图像的数量以及使用替代用词。我们在设计早期阶段完善用户界面和迭代内容的过程,可能会为未来开发用于临床研究或生物样本库研究以提高研究素养的工具提供参考。

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