title: Informal work and formal plans: articulating the active role of patients in cancer trajectories.
abstract: BACKGROUND
  Formal pathways models outline that patients should receive information in order to experience a coherent journey but do not describe an active role for patients or their relatives. The aim of this is paper is to articulate and discuss the active role of patients during their cancer trajectories. METHODS AND THEORY: An in-depth case study of patient trajectories at a Danish hospital and surrounding municipality using individual interviews with patients. Theory about trajectory and work by Strauss was included.
  
  
  RESULTS
  Patients continuously took initiatives to organize their treatment and care. They initiated processes in the trajectories, and acquired information, which they used to form their trajectories. Patients presented problems to the healthcare professionals in order to get proper help when needed.
  
  
  CONCLUSIONS
  Work done by patients was invisible and not perceived as work. The patients' requests were not sufficiently supported in the professional organisation of work or formal planning. Patients' insertion and use of information in their trajectories challenged professional views and working processes. And the design of the formal pathway models limits the patients' active participation. When looking at integrated care from the perspective of patients, the development of a more holistic and personalized approach is needed.
authors.affiliation: The Research Unit for General Practice and Section of General Practice, Department of Public Health, University of Copenhagen, Copenhagen, Denmark.
authors.forename: Rikke Juul
authors.initials: RJ
authors.lastname: Dalsted
authors.forename: Bibi
authors.initials: B
authors.lastname: Hølge-Hazelton
authors.forename: Marius Brostrøm
authors.initials: MB
authors.lastname: Kousgaard
authors.forename: John Sahl
authors.initials: JS
authors.lastname: Andersen
keywords: cancer; pathway models; patient role; patient trajectory