In recent years, there has been an increased focus on involving citizens in the development and execution of public policies. In the healthcare sector, this development is reflected through an increased political focus on patient involvement. Thus, this thesis will deal with the legislation on patient involvement and policy measures established to strengthen patient involvement. Furthermore, this thesis will explore the experiences of being involved in their treatment in patients with chronic diseases.
For this thesis, the Region of Northern Jutland has been selected as a case to investigate patient involvement in the region. The theoretical basis for this assignment is Vibeke Zoffmann's Guided Self-Decision, the concept of Empowerment, and Bell and Hindmoor's five modes of governance, respectively. To gain insight into the political patient-involvement initiatives, document analyses were performed on the Health Act, the Health Agreement, and Dialogue paper on increased involvement of patients and relatives. Also, five interviews were conducted by selected informants. The five informants had different chronic diseases and received different forms of treatment. The analysis is bipartite, where the document analyses form a structural part and the five interviews a stakeholder part.
The structural analysis revealed a political desire to put the patients at the centre of their treatment. Both the Health Act, the Health Agreement, and the Dialogue Paper describe that healthcare professionals must involve the patients and build a mutual relationship. From the structural analysis, it also appears that patients must be involved through delegation of governance tasks and thereby empowered. The stakeholder analysis concluded that the informants had different experiences of involvement and needs for this. This may be due to the age of the informants as well as the type and degree of illness. Overall, the informants felt fully or partially involved in their treatment. However, some informants felt more excluded from involvement. Some informants experienced a trusting relationship, while others found the staff in time trouble and therefore unable to build a close relationship. Therefore, from the structure and stakeholder analyses, a difference in expectations and experiences of patient involvement was seen.