背景:自我管理的基于网络的问卷被广泛用于收集患者和临床研究参与者的健康数据。REDCap(研究电子数据捕获;范德比尔特大学)是一个全球性的,用于构建和管理电子数据捕获的安全Web应用程序。不幸的是,通过REDCap收集电子数据的利益相关者需求和偏好很少被研究。
目的:本研究旨在调查REDCap研究人员和管理人员,以评估他们使用REDCap的经验,特别是他们对优势的看法,挑战,以及增强REDCap作为数据收集工具的建议。
方法:我们对美国REDCap成员组织的代表进行了一项基于网络的调查。调查记录了受访者的人口统计信息,通过REDCap收集的患者报告数据的质量,患者使用REDCap进行数据收集的经验,以及侧重于优势的开放式问题,挑战,以及增强REDCap数据收集体验的建议。描述性和推断性分析措施用于分析定量数据。主题分析被用来分析开放式的回应,侧重于优势,缺点,以及数据收集体验的增强。
结果:共有207名受访者完成了调查。受访者强烈同意或同意通过REDCap收集的数据是准确的(188/207,90.8%),可靠(182/207,87.9%),完成(166/207,80.2%)。超过一半的受访者强烈同意或同意患者发现REDCap易于使用(165/207,79.7%),可以在没有帮助的情况下成功完成任务(151/207,72.9%),并能及时做到(163/207,78.7%)。对不限成员名额答复的专题分析产生了8个主要主题:调查发展、用户体验,调查分布,调查结果,培训和支持,技术,安全,和平台功能。用户体验类别包括超过一半的优势代码(307/594,占代码的51.7%);同时,受访者表示在调查发展方面面临更高的挑战(169/516,占代码的32.8%),还提出了该类别的最高增强建议(162/439,占代码的36.9%)。
结论:受访者表示REDCap是有价值的,低成本,用于临床研究数据收集的安全资源。REDCap的数据收集经验在临床研究和护理人员和患者中普遍是积极的。然而,随着数据收集技术的进步和现代技术的普及,直观,和移动友好的数据收集接口,有一个关键的机会来增强REDCap体验,以满足研究人员和患者的需求。
BACKGROUND: Self-administered web-based questionnaires are widely used to collect health data from patients and clinical research participants. REDCap (Research Electronic Data Capture; Vanderbilt University) is a global, secure web application for building and managing electronic data capture. Unfortunately, stakeholder needs and preferences of electronic data collection via REDCap have rarely been studied.
OBJECTIVE: This
study aims to survey REDCap researchers and administrators to assess their experience with REDCap, especially their perspectives on the advantages, challenges, and suggestions for the enhancement of REDCap as a data collection tool.
METHODS: We conducted a web-based survey with representatives of REDCap member organizations in the United States. The survey captured information on respondent demographics, quality of patient-reported data collected via REDCap, patient experience of data collection with REDCap, and open-ended questions focusing on the advantages, challenges, and suggestions to enhance REDCap\'s data collection experience. Descriptive and inferential analysis measures were used to analyze quantitative data. Thematic analysis was used to analyze open-ended responses focusing on the advantages, disadvantages, and enhancements in data collection experience.
RESULTS: A total of 207 respondents completed the survey. Respondents strongly agreed or agreed that the data collected via REDCap are accurate (188/207, 90.8%), reliable (182/207, 87.9%), and complete (166/207, 80.2%). More than half of respondents strongly agreed or agreed that patients find REDCap easy to use (165/207, 79.7%), could successfully complete tasks without help (151/207, 72.9%), and could do so in a timely manner (163/207, 78.7%). Thematic analysis of open-ended responses yielded 8 major themes: survey development, user experience, survey distribution, survey results, training and support, technology, security, and platform features. The user experience category included more than half of the advantage codes (307/594, 51.7% of codes); meanwhile, respondents reported higher challenges in survey development (169/516, 32.8% of codes), also suggesting the highest enhancement suggestions for the category (162/439, 36.9% of codes).
CONCLUSIONS: Respondents indicated that REDCap is a valued, low-cost, secure resource for clinical research data collection. REDCap\'s data collection experience was generally positive among clinical research and care staff members and patients. However, with the advancements in data collection technologies and the availability of modern, intuitive, and mobile-friendly data collection interfaces, there is a critical opportunity to enhance the REDCap experience to meet the needs of researchers and patients.