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

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"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