What's next? Using data visualization to make sense of personalised paediatric critical care pathways

儿科重症监护(PCC)是一种高度专业化的服务，可以挽救婴儿和儿童的生命。然而，让孩子需要重症监护对父母来说是一件压力很大的事情，因为他们的孩子突然需要儿科重症监护病房(PICU)内的不同技术才能生存。这通常会导致父母持续的创伤后应激综合症，即使孩子已经从危重疾病中恢复[1]。PICU对父母来说是一个如此紧张的环境的一个常见原因是因为PCC患者遵循复杂的路径。这些途径对每个患者来说是不同的，根据他们的病情严重程度，它们需要不同程度的器官支持。父母们发现很难理解和驾驭这些复杂的路径，这给他们带来了压力和焦虑。无论PCC患者需要何种级别的护理，PICU中使用的技术通常都会生成大量数据(例如心率、血压、呼吸机数据等)。这为个性化护理路径的设计提供了信息。然而，在传统的口头咨询方法中，在不使用医学术语的情况下，以有意义的方式向父母传达这一复杂的专家信息尤其困难。一些临床医生会尝试绘制简图来解释，但这取决于临床医生绘制和通过他们的基本图画进行沟通的能力。在这个项目中，我们的目标是应用数据漫画和其他来自数据可视化和数据驱动的故事讲述的技术，为临床医生和家长之间提供有效的沟通。数据漫画是一种交流数据和数据可视化的方式，由巴赫[2，https://datacomics.github.io].]首创数据漫画结合了数据可视化和数据素养的方法[3]，它们已被发现是广泛受众的有效沟通媒介[4]。我们将在这项工作的基础上，探索进一步的沟通形式，以及如何从患者数据中生成这些个性化故事的核心问题。目的为了支持临床医生与父母的沟通，我们提出这项建议的目标如下：1.通过对临床和生理数据的分析，确定个性化的PCC路径和相关的健康指标。为非专家受众开发个性化PCC路径的新可视化，捕捉有关患者状态的关键信息并描述其护理的下一步步骤。这将涉及以用户为中心的设计方法，如访谈和焦点小组。我们的原型将是功能软件-生成漫画的应用程序等。3.评估可视化的有用性，从支持医生与父母的沟通和父母对子女PCC计划的理解方面。这也将涉及以用户为中心的设计方法，它将包括临床医生和父母的参与。改善沟通和了解他们孩子在PICU的状况和进展可能有助于减少父母的焦虑和情绪困扰，这是现代以家庭为导向的PCC分娩的一个重要因素。参考：[1]Bronner，M.B.等人，2010。儿科重症监护治疗后父母创伤后应激障碍的病程和预测因素。《儿科心理学杂志》，35(9)，966-974页。[2]巴赫，B.等，2018年4月。数据漫画的设计模式。收录于《2018年CHI计算机系统中人的因素会议论文集》(第1-12页)。[3]王智等人，2020年4月。数据可视化技术的小抄。收录于2020年CHI计算系统中人的因素会议论文集(第1-13页)。[4]王智等，2019年5月。比较数据漫画和信息图表的有效性和参与度。载于《2019年CHI计算系统中人的因素会议论文集》(第1-12页)。

Paediatric critical care (PCC) is a highly specialist service that saves infants' and children's lives. However, having a child needing critical care is a stressful event for parents, as their child suddenly requires different technologies within paediatric intensive care units (PICU) to survive. This often results in persistent post-traumatic stress syndrome in parents even after the child has recovered from critical illness [1].One common reason PICU is such a stressful environment for parents is because PCC patients follow complex pathways. These pathways are different for each patient and depending on their severity of illness, they require different levels of organ support. Parents find it particularly hard to make sense of and navigate these complex pathways, causing them stress and anxiety. Regardless of the level of care a PCC patient requires, the technologies used in PICU routinely generate large volumes of data (e.g. heart rate, blood pressure, ventilator data, etc.) which inform the design of personalized care pathways. However, communicating this complex specialist information in a meaningful way to parents without using medical jargons is particularly hard in the traditional verbal consultation method. Some clinicians will attempt to draw simplified diagrams to explain but this is dependent on the clinicians' ability to draw and communicate via their rudimentary drawings. In this project, we aim to apply data comics and other techniques from data visualization and data-driven storytelling to provide for an effective communication between clinicians and parents. Data comics are a way of communicating data and data visualizations, pioneered by Bach [2, https://datacomics.github.io]. Data comics combine methods from data visualization and data literacy [3], and they have been found an effective communication medium [4] for a wide range of audiences. We will build on this work and explore further forms of communication and the central question how to generate these personalized stories from the patient data.AimsTo support clinician-parent communication, our aims with this proposal are as follows:1. Identify personalized PCC pathways and associated health indicators through the analysis of clinical and physiological data.2. Develop novel visualizations of personalized PCC pathways for a non-expert audience, which capture key information about the patient's status and describe the next steps in their care. This will involve user-centered design methods such as interviews and focus groups. Our prototypes will be functional software-applications that generate comics, etc. 3. Evaluate the usefulness of the visualizations, in terms of support for doctor-parent communication and parents' understanding of PCC plan for their child. This will also involve user-centered design methods and it will include the participation of clinicians and parents.Improved communication and understanding of their child's condition and progress on PICU may help to reduce parental anxiety and emotional distress, an important factor in modern family-orientated PCC delivery.References:[1] Bronner, M.B. et al., 2010. Course and predictors of posttraumatic stress disorder in parents after pediatric intensive care treatment of their child. Journal of pediatric psychology, 35(9), pp.966-974.[2] Bach, B. et al, 2018, April. Design patterns for data comics. In Proceedings of the 2018 chi conference on human factors in computing systems (pp. 1-12).[3] Wang, Z. et al, 2020, April. Cheat sheets for data visualization techniques. In Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems (pp. 1-13).[4] Wang, Z. et al, 2019, May. Comparing effectiveness and engagement of data comics and infographics. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems (pp. 1-12).