The power of empirical data; lessons from the clinical registry initiatives in Scandinavian cancer care

Abstract

Background: In Scandinavia, there is a strong tradition for research and quality monitoring based on registry data. In Denmark, Norway and Sweden, 63 clinical registries collect data on disease characteristics, treatment and outcome of various cancer diagnoses and groups based on process-related and outcome-related variables. Aim: We describe the cancer-related clinical registries, compare organizational structures and quality indicators and provide examples of how these registries have been used to monitor clinical performance, develop prediction models, assess outcome and provide quality benchmarks. Further, we define unmet needs such as inclusion of patient-reported outcome variables, harmonization of variables and barriers for data sharing. Results and conclusions: The clinical registry framework provides an empirical basis for evidencebased development of high-quality and equitable cancer care. The registries can be used to follow implementation of new treatment principles and monitor patterns of care across geographical areas and patient groups. At the same time, the lessons learnt suggest that further developments and coordination are needed to utilize the full potential of the registry initiative in cancer care.

Cancer incidence and outcomes registries in an Australian context: a systematic review

“…Another notable example of successful data linkage between CIR and COR can be seen in Sweden, one of the five Nordic countries to utilize a unique personal identity code system. 30,31 This system allowed successful linkage of 25 COR to the population-based Swedish Cancer Registry with a linkage completeness of >95%. 31 Establishing links have potential to create a richer pool of data that is readily accessible for researchers, increasing the productivity of registries and ensuring the ethical usage of data.…”

Nordic cancer registration, a review of an invaluable source and example for surveillance, research and public health for more than 70 years

“…The Cancer Registry of Norway also took the initiative to include clinical cancer registries in the research institute, contrary to what was done in Denmark, where such databases have a steering committee from the multidisciplinary cancer groups and administration by the regions with other clinical databases (RKKP.dk). In Sweden cancer registration is federated to each of the 6 regions, also holding the clinical database recording INCA system (36). Beyond doubt, subsequent research activities will both secure quality and progress in treatment for cancer.…”

Small-area data on socioeconomic status and immigrant groups for evaluating equity of early cancer detection and care

“…A recent review of cancer care clinical registry initiatives in Scandinavian countries, published in this Journal [1], highlighted that further developments and coordination are needed to make full use of registry initiatives. It also emphasised that clinical registries needed to be enriched by updated information on socioeconomic variables to ensure equity of care.…”