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了解研究参与者对临床研究中数据共同创建和电子健康记录使用的看法。

Understanding Study Participants Views on Co-Creation of Data and Use of EHR in Clinical Studies.

作者信息

Scott Duncan Therese, Hägglund Maria

机构信息

Health Informatics Centre, Karolinska Institutet.

出版信息

Stud Health Technol Inform. 2018;247:341-345.

Abstract

In order to increase clinical trial participation, the reasons for participating need to be observed. Since there is rather inadequate information concerning how individuals such as patients, decides to participate in clinical trials semi-structured interviews have been done. Examining the use of EHR in clinical trials and co-creation of data, the result showed that it is important for the researches to have access to the patients' EHR and for the patients to contribute with their own ideas of research. Important aspects of further participation in clinical trials were that it should be fun and informative. The patients agreed on that the effort of participating could decrease with the use of electronically collection and self-reporting of data, e.g. through a patient portal.

摘要

为了提高临床试验的参与度,需要观察参与的原因。由于关于患者等个体如何决定参与临床试验的信息相当不足,因此进行了半结构化访谈。研究了电子健康记录(EHR)在临床试验中的使用以及数据的共同创建,结果表明,研究人员能够访问患者的EHR以及患者能够贡献自己的研究想法非常重要。进一步参与临床试验的重要方面是,试验应该有趣且能提供信息。患者们一致认为,通过使用电子数据收集和自我报告(例如通过患者门户),参与的工作量可能会减少。

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