CAREER: Advancing Pediatric Patient-Provider Communication through Collaborative Tracking and Data Sharing

这项研究将使儿童直接参与到他们自己的医疗保健中，他们的父母和医疗服务提供者作为合作的利益相关者。这项研究的对象是患有癌症和糖尿病的儿童。这使人们关注儿童保健利益攸关方之间信息共享和沟通的严重困难和需要。在治疗儿童慢性疾病时，与儿童患者进行信息、理解和开放的沟通对于减少患者的痛苦和焦虑以及实现更好的健康结果至关重要。在先验知识方面的差距是如何确定和支持儿童参与照顾自己的适当程度。这是困难的，因为儿童缺乏充分表达他们的需求、管理他们的治疗和做出护理决定的能力。为了应对这一挑战，本研究调查了技术在支持儿童患者表达疾病和健康方面的需求、感受和情绪方面可以发挥的作用，并帮助临床医生和家长更好地了解和沟通儿童的健康和心理社会状况。该项目调查了移动、无处不在和基于云的计算和信息学如何支持儿童、父母和医疗保健提供者之间的协作通信。研究的目的是调查(1)儿科护理沟通中主要利益相关者的挑战、需求和观点；(2)通过参与性讲习班进程共同设计，了解如何规定儿童在跟踪和通报其健康相关数据方面的作用和水平，并匹配对相关技术的要求；(3)一个原型工具，用于(a)收集适当的卫生数据，(b)在利益攸关方之间共享数据，以审查收集到的与卫生有关的数据，以及(c)将这些数据可视化，以支持分析和反思。该奖项反映了美国国家科学基金会的法定使命，并通过使用基金会的知识价值和更广泛的影响审查标准进行评估，被认为值得支持。

This research will work to directly involve children in their own healthcare, with their parents and medical providers as collaborating stakeholders. The study is situated among children suffering from cancer and diabetes. This brings focus to the acute difficulties of and need for information sharing and communication among stakeholders in children's healthcare. In treating chronic childhood illness, information, understanding, and open communication with a child patient are vital to decreasing patient distress and anxiety, and achieving better health outcomes. A gap in prior knowledge is how to determine and support the appropriate degree of children’s involvement in their own care. This is difficult because children lack the ability to fully express their needs, manage their treatment, and make care decisions. To address this challenge, this research investigates the roles that technologies can play in supporting child patients’ expression of needs, feelings, and emotions around illness and health, and helping clinicians and parents better understand and communicate about children’s health and psychosocial conditions. The project investigates how mobile, ubiquitous, and cloud-based computing and informatics can support collaborative communication among children, parents, and healthcare providers. Research aims are to investigate (1) the challenges, needs, and viewpoints of key stakeholders in the communication of pediatric care; (2) co-design, through a participatory workshop process, understanding of how to prescribe the role and level of children in tracking and communicating their health-related data, and matching requirements for associated technologies; and (3) a prototype tool for (a) collection of appropriate health data, (b) data sharing among stakeholders, to review health-related data collected, and (c) visualizations of this data, to support analysis and reflection.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.