Patient involvement in the development of the Danish surgical breast cancer patient pathway – An action research project

Although patient involvement is on the political agenda, the influence on clinical practice is poorly described. The aim of this study was to explore and evaluate the participatory process of involving patients and relatives in development of a surgical breast cancer patient pathway. The overall design was insider action research and included two Danish surgical breast cancer clinics. In dialogue meetings patients, relatives, and healthcare professionals (HCPs) discussed suggestions for improving the pathway. Patients and relatives were satisfied with the pathway organisation in general. However, suggestions related to information, communication, and choice of treatment were presented. In response to this, a patient decision aid was developed, tested, and implemented, and HCPs increased focus on male relatives, and made minor changes to the pathway. Participants were satisfied with the participatory process, however, recommendations for future dialogue meetings included shortening the follow-up period, using a skilled facilitator, reminding HCPs being open-minded, and emphasizing for patients and relatives that participation may require a surplus of mental resources. Overall, recommendations on patient involvement obtained from this project could, due to their general relevance, be implemented in clinical settings other than breast cancer. Furthermore, action research proved a suitable design for research on patient involvement.