Long Christopher R, Stewart M Kathryn, McElfish Pearl A
College of Medicine, Department of Psychiatry, Division of Health Services Research, University of Arkansas for Medical Sciences Northwest, Fayetteville, AR, USA.
Fay W. Boozman College of Public Health, University of Arkansas for Medical Sciences, Little Rock, AR, USA.
Trials. 2017 Oct 2;18(1):449. doi: 10.1186/s13063-017-2200-4.
Health research participants want the results of the studies in which they participate but do not typically receive them. Researchers generally express support for sharing results with participants but, in practice, may be unprepared or unwilling to do so. Many funders call for increased dissemination of research results beyond academic and clinical audiences, but few funders sponsor research to improve result sharing with participants. Although the solution appears straightforward (e.g., funders could incentivize researchers to share results with participants), there are critical gaps in knowledge that suggest the need for a more deliberate approach. For example, what ethical or practical concerns discourage researchers from returning results to participants? What exactly do participants plan to do with the results that they would like to receive? What are the best channels of communication for sharing results with particular participant populations? To address these knowledge gaps, we argue for a collaborative process to develop a research agenda related to result sharing with participants. With support and encouragement by funders, such research should evaluate the effects of different types of results (and results from different types of studies) on participants' behaviors, attitudes, and emotions; it should also examine the researchers' ethical, financial, logistical, methodological, and skill-related concerns and constraints related to sharing results with participants. Over time, collaborative research between researchers and participants can yield an evolving set of evidence-based guidelines for ethical, effective result sharing with participants.
参与健康研究的受试者希望获得他们所参与研究的结果，但通常却得不到。研究人员普遍表示支持与受试者分享研究结果，但在实际操作中，他们可能没有准备好或不愿意这样做。许多资助者呼吁扩大研究结果在学术和临床受众之外的传播范围，但很少有资助者资助旨在改善与受试者分享研究结果的研究。尽管解决方案看似简单直接（例如，资助者可以激励研究人员与受试者分享结果），但在知识方面存在关键差距，这表明需要采取更慎重的方法。例如，哪些伦理或实际问题阻碍了研究人员向受试者反馈结果？受试者究竟打算如何利用他们希望收到的结果？与特定受试者群体分享结果的最佳沟通渠道是什么？为了解决这些知识差距，我们主张通过一个协作过程来制定与向受试者分享结果相关的研究议程。在资助者的支持和鼓励下，此类研究应评估不同类型的结果（以及不同类型研究的结果）对受试者行为、态度和情绪的影响；还应审视研究人员在与受试者分享结果方面涉及伦理、财务、后勤、方法以及技能等方面的担忧和限制因素。随着时间的推移，研究人员与受试者之间的合作研究能够产生一套不断发展的、基于证据的指导方针，用于与受试者进行符合伦理且有效的结果分享。
