A qualitative research evaluation of a Portuguese computerized cancer registry

A cancer registry is a standardized tool to produce population-based data on cancer incidence and survival. Cancer registries can retrieve and store information on all cancer cases occurring in a defined population. The main sources of data on cancer cases usually include: treatment and diagnostic facilities (oncology centres or hospital departments, pathology laboratories, or imaging facilities etc.) and the official territorial death registry. The aim of this paper is to evaluate the north regional cancer registry (RORENO) of Portugal using a qualitative research. We want to characterize: the main functionalities and core processes, team involved, different healthcare institutions in the regional network and an identification of issues and potential improvements. RORENO links data of thirteen-two healthcare institutions and is responsible for the production of cancer incidence and survival report for this region. In our semi-structure interviews and observation of RORENO we identified a serious problem due to a lack of an automatic integration of data from the different sources. Most of the data are inserted manually in the system and this implies an extra effort from the RORENO team. At this moment RORENO team are still collecting data from 2011. In a near future it is crucial to automatize the integration of data linking the different healthcare institutions in the region. However, it is important to think which functionalities this system should give to the institutions in the network to maximize the engagement with the project. More than a database this should be a source of knowledge available to all the collaborative oncologic network.