Trusted Data Spaces as a Viable and Sustainable Solution for Networks of Population-Based Patient Registries

Abstract

Harmonization and integration of health data remain as the focus of many ongoing efforts toward the goal of optimizing health and health care policies. Population-based patient registries constitute a critical element of these endeavors. Although their main function is monitoring and surveillance of a particular disease within a given population, they are also an important data source for epidemiology. Comparing indicators across national boundaries brings an extra dimension to the use of registry data, especially in regions where supranational initiatives are or could be coordinated to leverage good practices; this is particularly relevant for the European Union. However, strict data protection laws can unintentionally hamper the efforts of data harmonization to ensure the removal of statistical bias in the individual data sets, thereby compromising the integrated value of registries' data. Consequently, there is the motivation for creating a new paradigm to ensure that registries can operate in an environment that is not unnecessarily restrictive and to allow accurate comparison of data to better ascertain the measures and practices that are most conducive to the public health of societies. The pan-European organizational model of cancer registries, owing to its long and successful establishment, was considered as a sound basis from which to proceed toward such a paradigm. However, it has certain drawbacks, particularly regarding governance, scalability, and resourcing, which are essential elements to consider for a generic patient registry model. These issues are addressed in a proposal of an adapted model that promises a valuable pan-European data resource for epidemiological research, while providing a closely regulated environment for the processing of pseudonymized patient summary data on a broader scale than has hitherto been possible.

Keywords: cancer registries; data federation; noncommunicable diseases; population-based patient registries; registry network model; trusted research environments.

Figure 1

Summary of the centralized European cancer-registry data collection and cleaning process.

Figure 2

Multiple data interfaces exist in the common pan-European registry model. Each interface adds barriers to the type of data interaction allowed. In particular, the interface presented to general data users is complex on account of the lack of a single access point.

Figure 3

A trusted registry environment or data space for a specific disease domain. The registries within the trusted data space are free to exchange pseudonymized data on the condition that no data leave the space and that the purpose of the exchange is legally and ethically compliant. A single interface point is provided by the coordination entity that works in coordination with all the registries in the data space.