Informal work and formal plans: articulating the active role of patients in cancer trajectories.

INTRODUCTION: 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. DISCUSSION: 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.

Danish general practitioners only play a minor role in the coordination of cancer treatment.

INTRODUCTION: Despite initiatives to integrate treatment and care across organisations, patient trajectories in Danish health-care are not well coordinated. Coordination among many health-care professionals is essential, and it is frequently suggested that a single person should perform the task of coordination. The aim of the article is to discuss whether general practitioners (GPs) may play a coordinating role for individual patients in Danish cancer treatment. MATERIAL AND METHODS: This study is based on individual interviews and focus groups analyzed by meaning condensation. RESULTS: The GP's potential to coordinate patient trajectories was limited by lack of involvement of the GPs by other health-care professionals and lack of needed information. Furthermore, many patients do not regard their GP as a coordinator. Patients who contacted their GP during treatment typically had a close relationship with their GP prior to their cancer diagnosis. In cases with a more distant relationship, patients did not see a need for the GP's involvement. The majority of patients' trajectories were decided within hospitals. The level of information provided to GPs varied much between hospitals and wards. In the majority of cases, GPs had no access to information or were not informed about hospital decisions affecting the patients' trajectories, and they were therefore unable to perform a coordinating role. CONCLUSION: GPs only played a minor or no role at all as coordinators of individual cancer patient trajectories. The findings of the present study question the idea that coordination throughout the entire health-care system may be assigned to a single individual as the involved parties belong to different organizations with different goals, managements and economic resources.