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

儿科重症监护 (PCC) 是一项高度专业的服务，可挽救婴儿和儿童的生命。然而，对于父母来说，有一个需要重症监护的孩子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) 中的不同技术才能生存。即使孩子从危重疾病中康复后，这通常也会导致父母持续出现创伤后应激综合症[1]。PICU 给父母带来如此压力的环境的一个常见原因是 PCC 患者遵循复杂的途径。这些途径对于每个患者来说都是不同的，并且根据他们疾病的严重程度，他们需要不同水平的器官支持。父母发现理解和驾驭这些复杂的途径特别困难，导致他们感到压力和焦虑。无论 PCC 患者需要何种程度的护理，PICU 中使用的技术通常会生成大量数据（例如心率、血压、呼吸机数据等），为个性化护理路径的设计提供信息。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家长传达这种复杂的专业信息尤其困难。一些临床医生会尝试绘制简化的图表来进行解释，但这取决于临床医生通过基本绘图进行绘制和交流的能力。在这个项目中，我们的目标是应用数据漫画和数据可视化和数据驱动的故事讲述等其他技术，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，由巴赫首创[2，https://datacomics.github.io]。数据漫画结合了数据可视化和数据素养的方法[3]，并且已成为广泛受众的有效沟通媒介[4]。我们将在此工作的基础上，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家长的沟通，我们此提案的目标如下：1。通过分析临床和生理数据确定个性化PCC路径和相关健康指标。2．为非专家受众开发个性化 PCC 路径的新颖可视化，捕获有关患者状态的关键信息并描述其护理的后续步骤。这将涉及以用户为中心的设计方法，例如访谈和焦点小组。我们的原型将是生成漫画等的功能性软件应用程序。 3. 评估可视化的有用性，包括对医生与家长沟通的支持以及家长对孩子 PCC 计划的理解。这还将涉及以用户为中心的设计方法，并包括临床医生和家长的参与。改善对孩子病情和 PICU 进展的沟通和了解可能有助于减少家长的焦虑和情绪困扰，这是现代家庭导向的 PCC 交付的一个重要因素。参考文献：[1] Bronner, M.B.等人，2010。儿童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)，第966-974页。[2] Bach, B. 等人，2018 年 4 月。数据漫画的设计模式。 2018 年 chi 计算系统中人为因素会议记录（第 1-12 页）。[3] Wang, Z. 等人，2020 年 4 月。数据可视化技术备忘单。 2020 年 CHI 计算系统人为因素会议记录（第 1-13 页）。[4] Wang, Z. 等，2019 年 5 月。比较数据漫画和信息图表的有效性和参与度。 2019 年 CHI 计算系统人为因素会议记录（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).