Background: When the 21 Swedish county councils decided to collaborate in the creation of a national system for knowledge-based management, patient participation was mandatory. Patient and next-of-kin representatives (PR) co-produced person-centred and cohesive clinical pathways together with healthcare professionals (HPR). Research on co-production in healthcare at the national level is scarce. The aim of this study is to explore experiences of patient participation from the perspectives of both PRs and HPRs when co-producing clinical pathways within the Swedish nationwide healthcare system for knowledge-based management.
Methods: A qualitative study was conducted. A strategic sample of nine PRs and eight HPRs were interviewed individually between August 2022 and January 2023 using a semi-structured interview guide. We analysed data using an inductive content analysis.
Results: Three main categories were identified: (1) Finding appropriate patient representativeness; (2) Working methods that facilitate a patient perspective; and (3) Influence of the patient perspective in the clinical pathways.
Conclusions: The study demonstrates the importance of patient and next-of-kin participation in the construction of clinical pathways at the national level. The results provide a platform for further research on patient participation on the national level and add to studies on if and how patient participation on this level has an impact on how the clinical pathways are put into practice at the micro level, and the support provided at the meso level. The study contributes to the growing body of literature studying patient participation and co-production.
Trial registration: Region Örebro County ID 276,940. An advisory opinion was obtained from the Swedish Ethical Review Authority (2021-05899-01).
Co-production of guidelines and clinical pathways with patients and next-of-kin representatives is increasingly emphasised at different levels in healthcare internationally. However, little has been documented and explored regarding experiences of patient participation on a national level. Patient participation was mandatory when a national system for knowledge-based management of healthcare was launched in Sweden. Knowledge management of healthcare is the collection of methods relating to creating, sharing, using and managing the knowledge and information of an organization. All 21 of Sweden’s regions and the government have supported this collaborative system consisting of multi-professional national working groups with patient representatives. The groups develop clinical pathways aiming to enhance a coordinated, equal and effective healthcare. The person-centred clinical pathways describe assessment, diagnosis, planning and evaluation for a condition, for example for patients with a hip fracture, or congestive heart failure. The study focuses on experiences of patient participation in the national working groups. We interviewed nine patient representatives and eight healthcare professional representatives from eleven different groups. Our findings show the importance of identifying and finding appropriate patient representativeness, having working methods that facilitate a patient perspective and the patient perspective influencing the clinical pathways. This study on patient participation in the construction of clinical pathways at the national level contributes to the growing body of literature on co-production of knowledge support. The findings highlight important learning for the continued development of meaningful patient participation on the national level. It also raises curiosity on how the national approach with co-production influences local levels where the guidelines are used.
Keywords: Clinical pathways; Co-production; Experiences; Healthcare; Healthcare system; Macro level; Management; Patient participation.
© 2024. The Author(s).