Patients’ involvement in improving cancer care: experiences in three years of collaboration between members of patient associations and health care professionals

ObjectiveThe aim of this study was to explore how members of patient associations (PACPs) and health care professionals (HCPs) experience collaboration in a network initiated by the health care system and aimed at improving cancer care.MethodsThe participants were asked to describe, after 1 and 3 years, their experiences of collaboration. Data collected were in the form of a written answer to a single, open-ended question, and the answers were analysed using inductive content analysis.ResultsThe analysis revealed four themes: the impact of processes that occur within the network, the impact of learning, the impact of innovation and development in cancer care, and the impact of PACP members’ personal cancer experience. Statements about the impact of the processes that occur within the network dominated at both occasions.ConclusionThis study of experiences of collaboration provides new data on the importance ascribed to such efforts between patients in an organised association and HCPs.Practice implicationsWe suggest that differences in perceptions and expectations should be taken into account in future collaborations between representatives of patient associations and of health care systems in order to reach out and to influence developments in cancer care.