Powell Claire, Szilassy Eszter, Cowan Katherine, Feder Gene, Gilbert Ruth, Howarth Emma, Johns Karen, Lindenberg Ursula, Gregory Alison
Institute of Child Health, University College London, London, UK
Centre for Academic Primary Care, Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
BMJ Open. 2025 Jan 22;15(1):e090017. doi: 10.1136/bmjopen-2024-090017.
Among health researchers, there is a growing appreciation of the importance of the involvement of service users and members of the public. This recognition has not only resulted in involvement guidelines and improved research ethics but also an increasing use of consensus processes with service users and members of the public to determine research priorities and questions and to agree outcomes to be measured in intervention studies. There is, however, limited advice about how to safely involve survivors of violence and abuse in consensus-based studies.
METHODS/RESULTS: This commentary provides an overview of the adaptations made to a process of core outcome set development, to ensure that survivors of violence and abuse felt safe, heard and supported, and able to contribute in a meaningful way.
We advocate for an iterative process of listening to and learning from survivors, as well as buy-in from funders to ensure research studies are appropriately resourced and involve sufficient planning time.
在健康研究人员中,对服务使用者和公众参与的重要性的认识日益增强。这种认识不仅产生了参与指南并改进了研究伦理,还越来越多地与服务使用者和公众采用共识过程来确定研究重点和问题,并就干预研究中要衡量的结果达成一致。然而,关于如何安全地让暴力和虐待幸存者参与基于共识的研究的建议有限。
方法/结果:本评论概述了为核心结局集制定过程所做的调整,以确保暴力和虐待幸存者感到安全、被倾听和得到支持,并能够以有意义的方式做出贡献。
我们主张采用迭代过程,倾听幸存者的意见并向他们学习,同时争取资助者的支持,以确保研究获得适当的资源并拥有足够的规划时间。