Patient involvement 2.0: Experience-based co-design supported by action research

Strong professionals who influence the development of healthcare services have dominated healthcare organizations for many years. However, this dominance has been challenged recently through patient involvement. One method of achieving patient involvement is experience-based co-design (EBCD), in which patients and healthcare professionals work together to improve care. Patient involvement has considerable potential, but also presents certain challenges. This article addresses these challenges using experiences from patients and healthcare professionals who participated in two action research projects that aimed to improve patient experienced quality using EBCD in pediatric care. The paper shows that patient involvement in quality improvements can challenge the traditional roles of professionals and patients by new roles as co-designers. The role as co-designer embraces new perspectives for healthcare professionals that force them to step out of their comfort zone. Accordingly, healthcare professionals are able to view patients as equal partners in improvement work. Reflecting dialogues during the projects offered eye-opening stories for patients and healthcare professionals that enabled them to construct a common picture of care. The contribution of this study is strengthening earlier research that argues that an action research approach can strengthen important values for successful EBCD projects: equal partnerships, new roles, and dialogue. The findings show that the combination of EBCD and action research is a promising approach to address the challenges of patient involvement in healthcare improvement.