Participatory action research: using experience-based co-design to improve the quality of healthcare services

Experienced-based Co-design (EBCD) is a form of participatory action research that specifically seeks to improve patient experiences, and therefore the broader quality, of healthcare services. Since being piloted in an English head and neck cancer service in 2006, EBCD has been implemented internationally in a range of clinical services. The aims of EBCD are to capture, understand and then improve how patients actually feel about and experience a health care process or service. The approach combines (1) a user-centred orientation (by adopting an ethnographic and filmed narrative approach) and (2) a participatory, collaborative change process, allowing staff to ‘see the person in the patient’ and placing patient experience at the centre of quality improvement. Patients and staff are equal partners in the overall co-design process. Independent evaluations of EBCD have shown positive impacts on the way staff deliver care as well as improving the experiences of patients. Dissemination of the approach has included the production of open-source, web-based EBCD toolkits that enable healthcare staff to directly partner patients and carers in improving local health care services. This chapter begins by briefly reviewing the use of patient experience data to improve the quality of health care services; it then outlines the origins of EBCD and provides an overview of a typical implementation, before reflecting on the evidence-base for such approaches. Possible future developments in the field of co-design and other ‘dialogic’ forms of organisational development are then discussed.