“From work as imagined to work as done” – exploration of how patient involvement is enacted in the Swedish national system for knowledge-driven management

Abstract Background Patient involvement occurs at multiple levels of the healthcare system—micro, meso, and macro—but research has predominantly focused on the micro level. In Sweden, patient involvement is a core component of the national system for knowledge-driven management (KMS), a macro-level initiative. However, little is known about how patient involvement is enacted in practice at this level. This study aims to explore the manifestations of patient involvement within the Swedish KMS by analyzing policy documents, stakeholder narratives, and observations from national working groups. To support interpretation, we applied the theoretical framework developed by Shorrock and Williams (2016), which distinguishes between four varieties of work: Work as Imagined, Prescribed, Disclosed, and Done. Methods A qualitative research design was used to capture this complex, context-dependent phenomena. Data sources included: (1) steering documents outlining formal policies and strategic goals; (2) interviews with key stakeholders to gather individual experiences and reflections; and (3) non-participant observations from two national working group meetings. Each dataset was first analyzed separately using content analysis and then interpreted through the lens of the Shorrock and Williams framework to enable cross-source synthesis. Results Data from documents, interviews, and observations aligned with three of the four varieties of work in the framework. Steering documents primarily reflected Work as Imagined, describing formal intentions and governance structures for patient involvement. Stakeholder narratives were largely categorized as Work as Disclosed, capturing personal interpretations, challenges, and enacted experiences. Observational data offered limited but insightful examples of Work as Done, revealing how patient involvement was performed in practice during meetings. Conclusions Analyzing observed activities provides essential insight into Work as Done, helping to bridge the gap between policy and practice. The study demonstrates the value of combining multiple data sources and applying a structured theoretical lens to better understand how patient involvement is operationalized at the macro level. Furthermore, the findings contribute to the refinement of the Shorrock and Williams framework by empirically illustrating its applicability to health system research.