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

Abstract

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.

Use and reporting of experience-based codesign studies in the healthcare setting: a systematic review

“…Process evaluation data were available for eight studies, with evaluation for Gustavsson’s neonatal and diabetes studies reported together 27. Both service users and service providers had positive views of the EBCD process26 28 29 and reported that specific, measurable, achievable, relevant, time-bound goals reflected their service improvement needs 29.…”

“…Participants in the Tsianakas cancer study24 stated that the collaborative nature of EBCD gave service users a greater sense of direct responsibility for the work and its outcomes built a strong relationship between service users and service providers and noted a higher level of clinical engagement in the improvement effort than is usually observed in other projects. Service user participants from the Gustavsson’s neonatal and diabetes studies27 reported that the diversity of views, when presented face-to-face, resulted in a common perspective of patient processes. Participants also noted that the power relationship between professionals and patients was more equal in the EBCD than in actual care relationships.…”

“…Consistent with previous reviews,6 8 the authors cited a lack of funding, support and time as barriers to codesign workshops and teams. Although participant views on involvement in EBCD were generally positive with service users reporting a more equal power dynamic than exists in the care relationship,27 the significance of these stages should not be understated as they allow for power relations between service providers and service users to equalise over time. By omitting workshops and/or small codesign teams, the voice of service users is less likely to be heard, and service providers remain expert providers rather than working as partners in a codesign process.…”

A qualitative research on co-creating care pathways for Sarcoma and GIST by stimulating reflection

“…8,9 It is argued that to meaningfully involve patients, involving them as equal partners in a knowledge co-creation process could be helpful. 10 This process consists of three steps: first, patients' implicit knowledge is made explicit (knowledge articulation); integrated with that of researchers and health professionals (knowledge integration) and sustainably implemented in healthcare innovations (knowledge embedment). In many cases, patients have difficulties in articulating their needs and ideas due to limited medical knowledge or being unable to think at a more abstract level.…”

The Oncology Family Forum: Collaborating With Families to Codesign Pediatric Oncology Services

“…The patient and family experience is an important source of knowledge ( 4 ) and central to improving care and creating sustainable health care systems for the future ( 5 , 6 ). Improved service efficiency has been linked to improvements in patient experience ( 1 ), and research has demonstrated links between patient satisfaction and health professional satisfaction ( 7 ).…”