Defragmenting the Self Decoding Models of Care

<p dir="ltr">The onset of a chronic condition such as diabetes leads to a significant shift in the identity and experience of a person, marked by the illness in their body and their interactions with the healthcare system. This transformation necessitates the adoption of new routines, restrictions, monitoring, and medication, which can often lead to feelings of burden and a loss of autonomy in everyday life. Confronted with the condition, some people demonstrate remarkable resilience and self-efficacy in managing their condition, while others struggle to cope with their changing situation. While several support systems and digital tools exist within the healthcare ecosystem, significant disparities remain in their adoption across patient groups. </p><p dir="ltr">“Care of the Self” is a continuous bodily requirement for the patient beyond the clinical setting, but is only examined within the clinic during consults, as a brief and periodic episode. In the life of the patient between these consults, their health is a complex interplay of factors that go beyond their clinical parameters, including diet, physical activity, lifestyle habits and socio-economic conditions. While managing these factors may be challenging for many patients, they can be valuable decision-making tools for clinicians in the consulting room, enabling them to connect to the patient’s past practices and suggest appropriate interventions for future care. With the recent emergence of Big Data, Artificial Intelligence, and Industry 5.0 within the connected healthcare ecosystem, there exist opportunities to tap into the complexities of data and information towards creating design models that empower people to be active participants in their healthcare network. </p><p dir="ltr">This practice-based research, conducted as a part of the “Second Pancreas Project”, aims to improve health outcomes by providing product and service affordances to strengthen the model of care towards improving patient agency. The research explores new languages, traditions, and ways of doing things to imagine care beyond the medicalisation of diabetes and in a way that is culturally constructed. </p><p dir="ltr">Situated at the intersection of design and healthcare, the doctoral research takes the approach of an expert-centred design process, illustrating a single use-case and an iterative, feedback-based method of MedTech development. As an alternative to setting a definitive design brief, a series of prototypes is used as provocations and mediators to elicit the tacit knowledge of experts working with “extreme patients” and to facilitate dialogue that informs design outcomes. Using a series of successive design sprints, the approach proposes an alternative manner of designing for a user in the healthcare domain and, in effect, making the patient central to the process. </p><p dir="ltr">The projects have investigated various anchors to facilitate this process. Beginning with interpreting food choices as a tool to facilitate engagement with one’s own health, to connecting the home and the clinic by curation and visualisation of data, and finally to bridging the information gap between the patient and doctor, the practice examines aspects of using distributed data from the present towards a future course of action. The culmination of this research is Project Stark, the final design sprint, now deployed as a dashboard interface. The Dashboard is capable of visualising a variety of data sets in a flexible and adaptive way for multiple stakeholders, connected to the patient’s healthcare ecosystem. It embodies the Model of Care, empowering the clinician with data insights towards an informed interaction and diagnosis while engaging the patient and the broader healthcare network. </p><p dir="ltr">The positioning of design in the healthcare space has emerged as a critical element in this doctoral research. As reflection-on-action, using the “Model of Shifting Contours”, I have decoded the various shifts that emerged through this practice. Design-as-care can transcend standard practices, often prioritising market readiness or placing the burden on users to define the criteria for design, opening possibilities for reimagining the role of the user. The Dashboard demonstrates the shift in the clinician’s practice, towards a data-informed, patient-focused approach to interaction and diagnosis in the consulting room. For the patient, this shift would mean a transition from “Care of the Self” to “Care of the Future Self”. Central to this model is the shift in the relationship to one of care between the clinician and the patient, and in a similar manner, between the designer and the clinician. </p><p dir="ltr">Designing for chronic care necessitates a focus on directing the practice towards long-term and sustainable impact, diverging from notions of disruptive or radical innovation. This practice proposes a new meaning for innovation in healthcare design, which I term “the shift”. The shift signifies a transition in the approach to designing for healthcare, the form of clinical practice, and the activation of patient agency, by enriching and adding value to existing practices while incrementally building new ones. These practice-based explorations have involved reflecting on how care can be purposefully integrated into healthcare design practices, and how it can reshape interactions among patients, healthcare providers, technologists, and designed artefacts. Through examining these dimensions, this research seeks to advance knowledge on the meaningful embedding of care within the context of healthcare design and its potential to shape both practice and outcomes.</p><p dir="ltr"><br></p>