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

遗传性心脏疾病(ICCs)是几种影响心脏传导系统和血管系统的罕见疾病的总称。ICCS是儿童和年轻人心源性猝死最常见的原因[1]。通常诊断是具有挑战性的，因为症状可能是谨慎的，只有在年轻人或家庭成员心源性猝死后才能做出诊断。一旦确诊，ICC就是慢性退行性疾病，需要长期的药物治疗，无法治愈。治疗通常是由患者的症状决定的，作为NHS护理途径的一部分，这些症状可能很难捕捉和量化。自我跟踪技术可以提供一个机会，帮助青少年了解和管理他们的状况，并支持他们的健康。自我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。这个项目还可以通过考虑青少年和青少年之间不同的自我护理实践，探索自我跟踪技术如何支持从共享护理向自我护理的转变。本研究的主要目标是探索患有ICC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向自我护理的转变？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他们的健康？将采用探索性的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的方法，然后是联合设计等设计方法。定性方法将有助于更好地了解患者对其病情的生活体验，捕获患者目前如何使用和体验自我跟踪技术。这之后将是一个迭代的参与式设计过程，将为患者和医疗专业人员等多个利益攸关方提供机会来考虑和创建支持这些患者群体的自我跟踪需求的设计。尽管人们普遍对使用技术支持个人自我护理感兴趣，但还没有人机交互(HCI)研究探索自我跟踪技术在ICC中的使用。传统的自我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。这一整体方法在设计用于自我护理的未来医疗自我跟踪技术时可能会产生更大的影响[2]。该项目可能与大奥蒙德街医院合作，后者拥有一个由胡安·卡斯基博士领导的遗传性心脏疾病单元，他过去曾与斯图尔特教授合作。参考文献[1]P.Schwarz，L.Crotti。来自死人的信息能拯救生命吗？美国心脏病学会杂志，49(2007)，第247-249页[2]Francisco Nunes、Nervo Verdezoto、Geraldine Fitzpatrick、Morten Kyng、Erik Grönvall和Cristiano Storni。2015年。人机界面中的自我护理技术：趋势、紧张和机遇。ACM交易电脑。-嗯。互动。22、6、第33条(2015年12月)，45页。DOI：https://doi.org/10.1145/2803173

"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