JMIR Publications

ABSTRACT

Background:

Population-based patient registries are entities that collect summary patient data from a well-defined population. Their main function is the monitoring and surveillance of a particular disease within their population catchment area, but they are also an important data source used in epidemiology. Comparing indicators across national boundaries brings considerable extra benefit to registries’ data, especially in regions where supranational initiatives are or could be coordinated to leverage good practices; this is particularly important for the European Union. Stricter data-protection laws however 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. A new paradigm is required to ensure registries can operate in an environment that is not unnecessarily restrictive and allow accurate comparison of data for better ascertaining measures and practices most conducive to the public health of societies.

Objective:

To propose a solution towards a viable and sustainable model for the integration of registry data at supranational level.

Methods:

The pan-European organisational model of cancer registries, owing to its long and successful establishment, was taken as a good starting point from which to propose a sustainable, generic model for patient registries. Drawbacks to the model, particularly with respect to scalability and resourcing, were addressed in an adapted model.

Results:

An inter-registry organisational model based along the lines of the European Network of Cancer Registries was adapted to tackle the governance and resourcing aspects essential for a generic patient-registry model. The adapted model is a proposal for how patient registries can inter operate to ensure harmonisation and quality of data for accurate comparison at supranational level.

Conclusions:

In view of the challenges relating to accurate and unbiased inter-comparison of population-based registry data across national boundaries for disease-surveillance purposes, a sustainable, generic patient-registry model is proposed. Integrating registry data is important for understanding progression and trends of the most prevalent diseases as well as for ascertaining effective control measures. The model promises a valuable data resource for epidemiological research, whilst providing a closely regulated environment for the processing of pseudonomised patient summary data on a broader scale than has hitherto been possible.