Pervasive Healthcare in Lived Experience: Thinking beyond the home

Abstract The National Health Service (NHS) in the UK, like many other public heath services worldwide, is facing a number of key challenges. Among them are an ageing population and a rising incidence of chronic health conditions. This situation requires a radical re-examination of how people manage their health and their healthcare in ways that challenge the relationship between people and healthcare services. Combining this observation with the opportunities afforded by pervasive information and communication technologies, we argue that design research should reach beyond simply locating devices and services to offer healthcare 'in the home' and should examine this broader agenda. Rather than focussing design discourse on the specifics of one location, we should adopt a holistic view, beginning from people's lived experience. In this position paper we describe the User-Centred Healthcare Design (UCHD) project, a 5-year collaboration between universities and NHS Trusts in South Yorkshire, UK. We suggest that new models of healthcare that re-define the institutional and social context of care are required if we are to meet the challenge of chronic illness. We describe our progress to date on the UCHD project, our commitment to placing patient experience at the centre of design, and our initial experiences of using an experience-based co-design method to improve outpatient services in a Sheffield hospital. Keywords-component; User Centred Healthcare Design, NHS, SY-CLARHC,Pervasive Health, Experience The United Kingdom's (UK) National Health Service (NHS) was created as part of range of welfare services created in the UK at the end of the Second World War. At that time, the primary demand for healthcare services arose from acute diseases, and the NHS was structured in a way that treated people as compliant patients, whose role was to inform clinicians of their symptoms, and the NHS focused on diagnosing and treating patients' acute diseases. The delivery model was that services were provided through a series of discrete care episodes, involving the patient in movement between different clinicians and healthcare professionals and different departments over time. Now over sixty years old, these traditional deliverable structures and roles in the NHS are facing changed social and economic circumstances. Five specific changes can be identified: • An ageing population who often suffer from multiple health problems rather than single illnesses, who obtain care not only from multiple departments of the NHS but also from many different groups within and outside of the NHS (e.g. family, neighbours, social care agencies, third sector organisations). • A rising incidence of chronic health problems, with people being required to take more responsibility for their own care in between clinic visits; • The increasing availability of commercial products and services to assist in self-care; • Increased expectations from patients who are used to receiving co-ordinated, responsive and customercentred services from private sector corporations; • Increased desire on the part of some patients to be active, interested and informed participants in decisions about, and the delivery of, their healthcare. These socio-economic changes in the context of a public healthcare system geared to acute services means that patients often experience their healthcare as fragmented, episodic, opaque, and not matched to their expectations. In addition, the changing demographics and rise in chronic conditions challenge the long term financial sustainability of the NHS. Responding to the challenges requires fundamental rethinking about how the NHS is structured and the way services are designed and operated. User Centred Healthcare Design (UCHD) is a 5-year project within the "South Yorkshire Collaboration for Leadership in Applied Health Research and Care" (SY-CLAHRC), funded by the National Institute for Health Research. SY-CLAHRC is a large scale research collaboration focusing on the challenges of self-care in a range of long term conditions. UCHD brings together health researchers and managers based in the NHS with design and technology researchers at Sheffield Hallam University. Together, our aim is to develop, evaluate, and promote user-centred methods for designing usercentred healthcare services. In particular, to find ways of working within the public health system that will make possible the structural, behavioural and philosophical changes needed to meet these challenges. We work in collaboration with health researchers, healthcare providers, patients, carers and the public to investigate the impact of user-centred methods in healthcare designing, and the challenges faced in adopting such methods within established public healt