数字健康研究中知情同意设计的考虑因素:参与者的观点。

Brian J McInnis, Ramona Pindus, Daniah Kareem, Camille Nebeker
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引用次数: 0

摘要

研究团队、潜在参与者和书面材料都会影响知情同意程序的成功与否。随着数字健康研究的日益普及,成功获得知情同意也面临着新的挑战。这项探索性研究采用了以人为本的设计流程,招募了 19 人参加四个在线焦点小组中的一个。参与者讨论了他们在知情同意方面的经验、接收研究信息的偏好以及对其他同意方式的看法。我们采用定性方法对数据进行了分析。确定了六大主题和十六个次主题,其中包括潜在参与者希望获得的研究信息、获取信息的偏好以及与研究团队成员联系的愿望。具体到数字健康,参与者表示需要了解这些技术是如何工作的,以及如何收集、存储和共享大量的细粒度个人信息。
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Considerations for the Design of Informed Consent in Digital Health Research: Participant Perspectives.

The research team, prospective participants, and written materials all influence the success of the informed consent process. As digital health research becomes more prevalent, new challenges for successful informed consent are introduced. This exploratory research utilized a human centered design process in which 19 people were enrolled to participate in one of four online focus-groups. Participants discussed their experiences with informed consent, preferences for receiving study information and ideas about alternative consent approaches. Data were analyzed using qualitative methods. Six major themes and sixteen sub-themes were identified that included study information that prospective participants would like to receive, preferences for accessing information and a desire to connect with research team members. Specific to digital health, participants expressed a need to understand how the technologies worked and how the volume of granular personal information would be collected, stored, and shared.

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来源期刊
CiteScore
3.50
自引率
7.70%
发文量
30
审稿时长
>12 weeks
期刊介绍: The Journal of Empirical Research on Human Research Ethics (JERHRE) is the only journal in the field of human research ethics dedicated exclusively to empirical research. Empirical knowledge translates ethical principles into procedures appropriate to specific cultures, contexts, and research topics. The journal''s distinguished editorial and advisory board brings a range of expertise and international perspective to provide high-quality double-blind peer-reviewed original articles.
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