Exploring how patient involvement is enacted in the Swedish national system for knowledge-driven management - "work as imagined and work as done".

backgroundPatient involvement occurs at multiple levels of the healthcare system, at micro (patient consultations), meso (team-based collaboration within hospital departments), and macro (shaping policies and governance structures) levels, but research has predominantly focused on the micro level. In Sweden, patient involvement is a core component of the Swedish National System for Knowledge-driven management (NSK), a macro-level initiative. However, little is known about how patient involvement is enacted in practice at this level. This study aimed to explore patient involvement within the Swedish NSK in terms of motives, intentions and suggested progressions. To support the interpretation, we applied a theoretical framework to identify “work” as characterized in four different varieties; work as imagined; work as prescribed; work as disclosed and work as done.

methodsA qualitative research design was used. 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.

resultsData from documents, interviews, and observations aligned with three of the four varieties of work; 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. Work-as prescribed was related to the process of collaboration with patient organizations, which also contributed to the recruitment of two patient representatives. Observational data offered limited but insightful examples of Work as Done, revealing how patient involvement was performed in practice during meetings.

conclusionsThis study demonstrates the value of combining diverse data sources and applying structured theoretical lens for analyses to better understand how patient involvement is operationalized at the macro level, i.e. how policy intentions are turned into concrete actions, rules and structures. Analyzing observed activities provides essential insight into Work as Done, helping to bridge the gap between policy and practice and invites further exploration. Furthermore, the findings contribute to the refinement of the Shorrock and Williams framework by empirically illustrating its applicability in healthcare services research.