Research & Evaluation, American Institutes for Research, Washington, DC 20007, USA.
Development Services Group, Inc, Bethesda, MD 20814, USA.
J Clin Epidemiol. 2019 Feb;106:60-69. doi: 10.1016/j.jclinepi.2018.10.006. Epub 2018 Oct 19.
Sharing individual participant data (IPD) among researchers, on request, is an ethical and responsible practice. Despite numerous calls for this practice to be standard, however, research indicates that primary study authors are often unwilling to share IPD, even for use in a meta-analysis. This study sought to examine researchers' reservations about data sharing and to evaluate the impact of sending a data-sharing agreement on researchers' attitudes toward sharing IPD.
To investigate these questions, we conducted a randomized controlled trial in conjunction with a Web-based survey. We searched for and invited primary study authors of studies included in recent meta-analyses. We emailed more than 1,200 individuals, and 247 participated. The survey asked individuals about their transparent research practices, general concerns about sharing data, attitudes toward sharing data for inclusion in a meta-analysis, and concerns about sharing data in the context of a meta-analysis. We hypothesized that participants who were randomly assigned to receive a data-sharing agreement would be more willing to share their primary study's IPD.
Results indicated that participants who received a data-sharing agreement were more willing to share their data set, compared with control participants, even after controlling for demographics and pretest values (d = 0.65, 95% CI [0.39, 0.90]). A member of the control group is 24 percent more likely to share her data set should she receive the data-sharing agreement.
These findings shed light on data-sharing practices, attitudes, and concerns and can be used to inform future meta-analysis projects seeking to collect IPD, as well as the field at large.
根据请求,与研究人员共享个体参与者数据(IPD)是一种合乎道德且负责任的做法。然而,尽管人们多次呼吁将这种做法标准化,但研究表明,主要研究作者通常不愿意共享 IPD,即使是用于荟萃分析也是如此。本研究旨在探讨研究人员对数据共享的保留意见,并评估发送数据共享协议对研究人员共享 IPD 态度的影响。
为了调查这些问题,我们结合基于网络的调查进行了一项随机对照试验。我们搜索并邀请了最近荟萃分析中包含的研究的主要研究作者。我们向 1200 多人发送了电子邮件,有 247 人参与。该调查询问了个人关于他们的透明研究实践、对数据共享的普遍关注、对将数据共享用于荟萃分析的态度以及对在荟萃分析背景下共享数据的关注。我们假设随机分配到数据共享协议的参与者更愿意分享他们的主要研究的 IPD。
结果表明,与对照组参与者相比,收到数据共享协议的参与者更愿意分享他们的数据集,即使在控制人口统计学和前测值后也是如此(d=0.65,95%CI [0.39, 0.90])。如果对照组的一名成员收到数据共享协议,她更有可能分享她的数据集。
这些发现揭示了数据共享实践、态度和关注点,并可用于为未来寻求收集 IPD 的荟萃分析项目以及更广泛的领域提供信息。