Self Tracking Technologies for Self Care: In Teenagers & Young Adults with Inherited Cardiac Conditions

“遗传性心脏病（ICC）是影响心脏传导系统和血管系统的几种罕见疾病的总称。ICC是儿童和年轻人心源性猝死的最常见原因[1]。通常诊断是具有挑战性的，因为症状可能是谨慎的，诊断可能只在年轻人或家庭成员的心脏性猝死后进行。一旦确诊ICC是慢性退行性疾病，需要长期的医疗管理，不能治愈。治疗通常取决于患者的症状，这些症状很难作为NHS护理途径的一部分进行捕获和量化。自我跟踪技术可以提供一个机会，帮助青少年和年轻人了解和管理他们的状况，并支持健康。自跟踪技术还可以帮助医疗专业人员了解病情，并促进进一步的数据驱动治疗方法。本项目还将探讨自我跟踪技术如何通过考虑青少年和年轻人之间不同的自我护理实践来支持从共享护理到自我护理的过渡。本研究的主要目标是探索与ICC一起生活的青少年和年轻人的自我跟踪需求。目的是回答以下研究问题：这些患者群体目前使用的自我跟踪实践是什么？自我跟踪技术如何支持从共享护理到自我护理的过渡？如何设计自我跟踪技术来帮助这些患者群体了解和管理他们的病情并支持健康？将采用探索性用户驱动的研究方法。将使用在线民族志和访谈等定性方法相结合，然后使用共同设计等设计方法。定性方法将有助于更好地了解患者对其病情的生活体验，捕捉患者目前如何使用和体验自我跟踪技术。随后将进行迭代参与式设计过程，为患者和医疗专业人员等多个利益相关者提供考虑和创建支持这些患者群体自我跟踪需求的设计的机会。尽管人们对使用技术来支持个人自我护理产生了广泛的兴趣，但没有人机交互（HCI）研究探索了在ICC中使用自我跟踪技术。传统的自跟踪技术通常是从医学角度设计的，重点是生理测量[2]。开发人员现在认识到，采用更全面的设计方法是有好处的，目的是将自我跟踪技术融入个人的日常生活，以实现自我护理。在设计未来的自我护理医疗自我跟踪技术时，这种整体方法可能会产生更大的影响[2]。该项目可以与大奥蒙德街医院合作，该医院有一个由Juan Kaski博士领导的遗传性心脏病部门，他过去曾与Stuart教授合作。参考文献[1] P.施瓦茨，L.克罗蒂来自死者的信息能拯救生命吗？Journal of the American College of Cardiology，49（2007），pp. 247-249[2]弗朗西斯科努内斯，Nervo Verdezoto，Geraldine菲茨帕特里克，Morten Kyng，Erik Grönvall，and Cristiano Storni. 2015. HCI中的自我护理技术：趋势，紧张局势和机会。ACM传输计算- Hum.互动. 22、6、第33条（2015年12月），45页。DOI：https://doi.org/10.1145/2803173网站

"Inherited cardiac conditions (ICCs) is an umbrella term for several rare conditions that affect the hearts conduction system and vasculature. ICCs are the most common cause of sudden cardiac death in children and young adults [1]. Often diagnosis is challenging as symptoms may be discreet, diagnosis may only be made after the sudden cardiac death of a young adult or a family member. Once diagnosed ICCs are chronic degenerative conditions, that require long term medical management, and cannot be cured. Treatment is often dictated by a patient's symptoms which can be hard to capture and quantify as part of the NHS care pathway. Self-tracking technology could offer an opportunity to help teenagers and young adults understand and manage their condition and support wellbeing. Self tracking technologies may also aid a medical professionals understanding of the condition and facilitate further data driven treatment approaches. There is also scope for this project to explore how self-tracking technologies may support the transition from shared care to self-care, by considering the different selfcare practices between teenagers and young adults.The key objective of this research is to explore the self-tracking needs of teenagers and young adults living with ICCs. With the aim of answering the following research questions:What are the current self-tracking practices utilised by these patient groups? How can self-tracking technologies support the transition from shared care to selfcare?How can self-tracking technology be designed to help these patient groups understand and manage their condition and support wellbeing?An explorative user driven research approach will be adopted. A combination of qualitative methods such as online ethnography and interviews will be used, followed by design methods such as co-design. Qualitative methods will help develop a greater understanding of a patients lived experience with their condition, capturing how patients currently use and experience self tracking technology. This will be followed by an iterative participatory design process which will provide multiple stakeholders such as patients and medical professionals with the opportunity to consider and create designs that support the self-tracking needs of these patient groups. Despite widespread interest in the use of technology to support individual self-care, no human computer interaction (HCI) research has explored the use of self-tracking technologies in ICCs. Traditional self-tracking technologies typically have been designed from a medical perspective, with a focus on physiological measurements [2]. Developers now recognise that there are benefits to adopting a more holistic design approach with the aim of self-tracking technology for self care integrating into the everyday lives of individuals. This holistic approach may offer increased impact when designing future medical self-tracking technologies for selfcare [2].This project could be in collaboration with Great Ormond Street Hospital, who have an inherited cardiac conditions unit lead by Dr Juan Kaski, who has collaborated with Professor Stuart in the past. References[1] P. Schwarz, L. Crotti. Can a message from the dead save lives? Journal of the American College of Cardiology, 49 (2007), pp. 247-249[2] Francisco Nunes, Nervo Verdezoto, Geraldine Fitzpatrick, Morten Kyng, Erik Grönvall, and Cristiano Storni. 2015. Self-Care Technologies in HCI: Trends, Tensions, and Opportunities. ACM Trans. Comput.-Hum. Interact. 22, 6, Article 33 (December 2015), 45 pages. DOI:https://doi.org/10.1145/2803173