Patients at the centre of design to improve the quality of care; exploring the experience-based co-design approach within the NHS

Patient experience is a key domain within the concept of high quality healthcare and efforts to enhance the experience of care remains a key priority for the National Health Service. Experience based co-design (EBCD) is a quality improvement approach specifically developed for use within the healthcare setting. This thesis aimed to explore how, why and under what circumstances EBCD ‘works’. This is in order to understand more about the mechanisms of change over time and contribute towards the evidence base of improvement science. However, the level of staff engagement within the EBCD project declined overtime making it difficult to fully explore the mechanisms of change from multiple stakeholders’ perspectives. Therefore, the original aim of thesis was modified in order to explore the experience of participation for people involved within an EBCD quality improvement project in an acute health care setting. A systematic review was conducted to assess the implementation and the effectiveness of the EBCD approach. The key findings revealed a variation in fidelity, little exploration of the mechanisms associated with the theory of change and little evidence regarding the experience of patients from black and minority ethnic groups. Through the lens of improvement science three qualitative studies were conducted using interpretative phenomenological analysis to explore the experiences of multiple stakeholders during the EBCD process. The analysis suggests several novel findings that compliment and add to the extant literature: that a richer picture of patient experience is obtained when patients are formally involved in gathering data during the discovery phase; that the use of designers may enhance the approach and help to create a more democratic and user-centred design process; storytelling had therapeutic benefit for patients; that EBCD may be a useful way to engage marginalised groups within quality improvement efforts. However, the consequences of EBCD not being delivered as intended can negatively impact on relationships and achieving successful outcomes. EBCD heralds a different way of improving patient experience and underpins deeper changes to attitudes and behaviour from staff and patients that are required to meaningfully change the way care is delivered and received.