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美国研究中代表性不足患者对电子知情同意的看法:一项焦点小组研究

Perspectives on Electronic Informed Consent From Patients Underrepresented in Research in the United States: A Focus Group Study.

作者信息

Simon Christian M, Schartz Helen A, Rosenthal Gary E, Eisenstein Eric L, Klein David W

机构信息

3 Duke University, Durham, NC, USA.

1 The University of Iowa, Iowa City, USA.

出版信息

J Empir Res Hum Res Ethics. 2018 Oct;13(4):338-348. doi: 10.1177/1556264618773883. Epub 2018 May 23.

Abstract

Digital informed consent may better inform individuals about health research and increase participation. In the United States and elsewhere, minorities and rural populations are underrepresented in health research and may benefit from well-designed electronic informed consent (eIC). Seven focus groups were conducted with 50 Caucasian, African American, and rural patients in the United States. Participants were asked their preferences for a paper versus electronic informed consent document. Participants found the e-version easier to use, more interesting, and better for understanding. Minority participants emphasized limited access, computer literacy, and trust barriers to eIC. Rural participants were concerned about accessibility, connectivity, privacy, and confidentiality. People see value in electronic consenting. Researchers should consider barriers to eIC among underrepresented populations before recruitment.

摘要

数字知情同意可能会更好地让个人了解健康研究并提高参与度。在美国和其他地方,少数族裔和农村人口在健康研究中的代表性不足,可能会从精心设计的电子知情同意(eIC)中受益。在美国,对50名白种人、非裔美国人和农村患者进行了7个焦点小组访谈。询问了参与者对于纸质版与电子版知情同意文件的偏好。参与者发现电子版更易于使用、更有趣且更有助于理解。少数族裔参与者强调了获取受限、计算机素养以及对电子知情同意的信任障碍。农村参与者则担心可及性、连接性、隐私和保密性。人们认为电子同意具有价值。研究人员在招募前应考虑未被充分代表人群中电子知情同意的障碍。

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