Introduction This realist literature review, regarding active patient involvement in healthcare quality improvement (QI), seeks to identify possible mechanisms that contribute to success or failure. Furthermore, the paper outlines key considerations for organising and supporting patient involvement in healthcare QI efforts.

Methods Two literature searches were performed. Altogether, 1,204 articles from a healthcare context were screened, focusing on improvement efforts that involve patients, healthcare professionals and/or managers and leaders. Among these, 107 articles fulfilled the chosen study selection criteria and were further analysed. 18 articles underwent a full realist review. In the realist synthesis, context-mechanism-outcome configurations were articulated as middle-range theories and organised thematically to generate a program theory on how active patient involvement in QI efforts might work.

Results The articles exhibited a diversity of patient involvement approaches at different levels of healthcare organisations. To be successful, organisations’ support of QI efforts that actively involved patients tailored the QI efforts to their context to achieve the desired outcomes, and involved the relevant microsystem members. Furthermore, it promoted interaction and partnership within the microsystem, and supported the behavioural change that follows.

Conclusion This realist synthesis generates a program theory for active patient involvement in QI efforts; active patient involvement can be a tool (resource), if tailored for interaction and partnership (reasoning), that leads to behaviour change (outcome) within healthcare QI efforts. The theory explains essential resource and reasoning mechanisms, and outcomes that together form guidance for healthcare organisations when managing active patient involvement in QI efforts.

BACKGROUND: Co-production and co-design approaches to quality improvement (QI) efforts are gaining momentum in healthcare. Yet, these approaches can be challenging, not least when it comes to patient involvement. The aim of this study was to examine what might influence QI efforts in which patients are involved, as experienced by the patients and the healthcare professionals involved.

METHODS: This study involved a qualitative design inspired by the constructivist grounded theory. In one mid-sized Swedish hospital's patient process organisation, data was collected from six QI teams that involved patients in their QI efforts, addressing care paths for patients with transient, chronic and/or multiple parallel diagnoses. Field notes were collected from participant observations during 53 QI team meetings in three of the six patient processes. Individual, semi-structured interviews were conducted with 12 patients and 12 healthcare professionals in all the six QI teams.

RESULTS: Patients were involved in QI efforts in different ways. In three of the QI teams, patient representatives attended team meetings regularly. One team consulted patient representatives on a single occasion, one team collected patient preferences structurally from individual interviews with patients, and one team combined interviews and a workshop with patients. The patients' and healthcare professionals' expressions of what might influence the QI efforts involving patients were similar in several ways. QI team members emphasized the importance of organisational structure and culture. Furthermore, they expressed a desire for ongoing interaction between patients and healthcare professionals in healthcare QI.

CONCLUSIONS: QI team members recognised continuous dialogue and collective thinking by the sharing of experiences and preferences between patients and healthcare professionals as essential for achieving better matches between healthcare resources and patient needs in their QI efforts. Significant structural and cultural aspects of performing QI in complex hospital organisations were considered to be obstructions to progress. Therefore, to sustain learning and behaviour change through QI efforts at the team level, a deeper understanding of how structural and cultural aspects of QI promote or prevent success appears essential.