Personalized Feedback for Personalized Trials: Construction of Summary Reports for Participants in a Series of Personalized Trials for Chronic Lower Back Pain

• Published in: Harvard data science review 2022-01, Vol.4 (SI3)
• Main Authors: D'Angelo, Stefani, Ahn, Heejoon, Miller, Danielle, Monane, Rachel, Butler, Mark
• Format: Article
• Language: English
• ISSN: 2688-8513; 2644-2353; 2644-2353
• DOI: 10.1162/99608f92.d5b57784

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.