D'Angelo Stefani, Ahn Heejoon, Miller Danielle, Monane Rachel, Butler Mark
Institute of Health System Science, Feinstein Institutes for Medical Research, Northwell Health; Manhasset, NY, USA.
Harv Data Sci Rev. 2022;4(SI3). doi: 10.1162/99608f92.d5b57784. Epub 2022 Sep 8.
Personalized (N-of-1) trials offer a patient-centered research approach that can provide important clinical information for patients when selecting which treatment options best manage their chronic health concern. Researchers utilizing this approach should present trial results to patients in a clear and understandable manner in order for personalized research trials to be useful to participants. The current study provides participant feedback examples for personalized trial reports using lay summaries and multiple presentation styles from a series of 60 randomized personalized trials examining the effects of massage and yoga versus usual care on chronic lower back pain (CLBP). Researchers generated summary participant reports that describe individual participant results using multiple presentation modalities of data (e.g., visual, written, and auditory) to offer the most appealing style for various participants. The article discusses contents of the participant report as well as participant satisfaction with the personalized summary report, captured using a satisfaction survey administered after study completion. The results from the satisfaction survey in the current study show that participants were generally satisfied with their personalized summary report. Researchers will use feedback from the participants in the current study to refine personalized feedback reports for future studies.
个体化(单病例)试验提供了一种以患者为中心的研究方法,在患者选择最能有效管理其慢性健康问题的治疗方案时,可为患者提供重要的临床信息。采用这种方法的研究人员应以清晰易懂的方式向患者呈现试验结果,以便个体化研究试验对参与者有用。本研究提供了个体化试验报告的参与者反馈示例,这些报告使用了通俗易懂的总结以及一系列60项随机个体化试验中的多种呈现方式,这些试验考察了按摩和瑜伽与常规护理相比对慢性下腰痛(CLBP)的影响。研究人员生成了总结参与者报告,使用多种数据呈现方式(如视觉、书面和听觉)描述个体参与者的结果,为不同参与者提供最具吸引力的方式。本文讨论了参与者报告的内容以及参与者对个体化总结报告的满意度,这是通过在研究结束后进行的满意度调查来获取的。本研究中满意度调查的结果表明,参与者总体上对他们的个体化总结报告感到满意。研究人员将利用本研究中参与者的反馈来完善未来研究的个体化反馈报告。