Cooper Alan P, Nguyen Linda, Irelewuyi Oluwapolola, Miller Steven P
Department of Paediatrics, The Hospital for Sick Children, Toronto, ON M5G 1X8, Canada.
Neurosciences & Mental Health, SickKids Research Institute, Toronto, ON M5G 0A4, Canada.
Children (Basel). 2024 Oct 19;11(10):1266. doi: 10.3390/children11101266.
It has become increasingly common for researchers to partner with patients as members of the research team and collaborate to use their lived experiences to shape research priorities, interventions, dissemination, and more. The patient-oriented research (POR) model has been adopted by both adult and pediatric health researchers. This cultural change to conducting pediatric health research brings with it new methodologies, tools, challenges, and benefits. In this review, we aim to provide guidance on how to conduct POR for pediatric populations using examples from the literature. We describe considerations for engagement before the project begins, for engagement across the research cycle, and for measurement and evaluation. We aim to show that conducting POR is feasible, beneficial, and that many common challenges and barriers can be overcome with preparation and usage of specific tools.
研究人员与患者作为研究团队成员合作，并共同利用患者的生活经历来确定研究重点、干预措施、传播方式等，这种情况变得越来越普遍。成人和儿科健康研究人员都采用了以患者为导向的研究（POR）模式。这种开展儿科健康研究的文化变革带来了新的方法、工具、挑战和益处。在本综述中，我们旨在通过文献中的实例，为如何针对儿科人群开展POR提供指导。我们描述了项目开始前参与的注意事项、研究周期中的参与注意事项以及测量和评估的注意事项。我们旨在表明，开展POR是可行且有益的，并且通过准备和使用特定工具，可以克服许多常见的挑战和障碍。
