临终关怀中的泛在健康数据为何失效：患者数据-解读-行动循环断裂体验研究
When Ubiquitous Health Data Stops Helping: Patients' Experience of Breakdowns in the Data-Interpretation-Action Loop at the End of Life
通过对25名终末期患者和8名临床医生的半结构化访谈，研究识别出临终场景下泛在健康数据使用的三类反复模式：可见数据缺乏解释路径导致反复且未解决的意义建构；输出可理解但建议行动不符合患者变化的身体能力、照护目标或决策角色；数据嵌入多个照护环境时难以脱离。患者并非拒绝数据，而是呼吁减少数据暴露并转向存在性支持。
arXiv:2610.23259v1 Announce Type: new Abstract: Ubiquitous computing systems in healthcare often assume that greater data visibility improves awareness, interpretation, and action. In end-of-life care, however, this assumption warrants scrutiny. Through semi-structured interviews with 25 terminal-stage patients as primary informants and 8 clinicians as supplementary informants, we examine patients' descriptions of how they encountered, interpreted, acted on, and disengaged from state signals, trajectories, algorithmic outputs, and behavioral audits. Our analysis identifies three recurrent patterns in these descriptions. First, participants described repeated and unresolved sensemaking when visible data lacked explanatory pathways. Second, they described outputs they could understand but whose suggested actions did not fit their changing bodily capacities, care goals, or decision-making roles. Third, they described difficulty disengaging when data remained embedded across care environments. Rather than rejecting data altogether, patients called for less data exposure and a reorientation toward existential support. Based on this analysis, we situate data exposure as a central interaction problem in end-of-life ubiquitous computing and derive design implications for interpretive stability, care-context alignment, and existential support.
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来源：arXiv · Human-Computer Interaction · arxiv.org