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

"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

Impact on Health and Care
The CDT primarily addresses the most pressing needs of nations such as the UK - namely the growth of expenditure on long term health conditions. These conditions (e.g. diabetes, depression, arthritis) cost the NHS over £70Bn a year (~70% of its budget). As our populations continue to age these illnesses threaten the nation's health and its finances.

Digital technologies transforming our world - from transport to relationships, from entertainment to finance - and there is consensus that digital solutions will have a huge role to play in health and care. Through the CDT's emphasis on multidisciplinarity, teamwork, design and responsible innovation, it will produce future leaders positioned to seize that opportunity.

Impact on the Economy
The UK has Europe's 2nd largest medical technology industry and a hugely strong track record in health, technology and societal research. It is very well-placed to develop digital health and care solutions that meet the needs of society through the creation of new businesses.

Achieving economic impact is more than a matter of technology. The CDT has therefore been designed to ensure that its graduates are team players with deep understanding of health and social care systems, good design and the social context within which a new technology is introduced.

Many multinationals have been keen to engage the CDT (e.g. Microsoft, AstraZeneca, Lilly, Biogen, Arm, Huawei ) and part of the Director's role will be to position the UK as a destination for inwards investment in Digital Health. CDT partners collectively employ nearly 1,000,000 people worldwide and are easily in a position to create thousands of jobs in the UK.

The connection to CDT research will strongly benefit UK enterprises such as System C and Babylon, along with smaller companies such as Ayuda Heuristics and Evolyst.

Impact on the Public
When new technologies are proposed to collect and analyse highly personal health data, and are potentially involved in life or death decisions, it is vital that the public are given a voice. The team's experience is that listening to the public makes research better, however involving a full spectrum of the community in research also has benefits to those communities; it can be empowering, it can support the personal development of individuals within communities who may have little awareness of higher education and it can catalyse community groups to come together around key health and care issues.

Policy Makers
From the team's conversations with the senior leadership of the NHS, local leaders of health and social care transformation (see letters from NHS and Bristol City Council) and national reports, it is very apparent that digital solutions are seen as vital to the delivery of health and care. The research of the CDT can inform policy makers about the likely impact of new technology on future services.

Partner organisation Care & Repair will disseminate research findings around independent living and have a track record of translating academic research into changes in practice and policy.

Carers UK represent the role of informal carers, such as family members, in health and social care. They have a strong voice in policy development in the UK and are well-placed to disseminate the CDTs research to policy makers.

STEM Education
It has been shown that outreach for school age children around STEM topics can improve engagement in STEM topics at school. However female entry into STEM at University level remains dramatically lower than males; the reverse being true for health and life sciences. The CDT outreach leverages this fact to focus STEM outreach activities on digital health and care, which can encourage young women into computer science and impact on the next generation of women in higher education.

For academic impact see "Academic Beneficiaries" section.