Regulatory framework and best practices of data linkage and interoperability for disease registries and health information systems in Europe: literature and legal review

Data linkage is a methodology used to pool information from different data sources and to produce population-based indicators for policy making. Linking various data sources improves the completeness and comprehensiveness of information to guide effective patient care and improve the performance of health services.

In the field of non-communicable diseases (NCDs), data linkage is particularly needed to investigate the disease burden and progression, risk factors, care pathways and long-term outcomes for a range of related conditions. While many countries have invested to increase their capacity in data linkage and interoperability, wide differences still co-exist in Europe.

This report aims to provide an update of the current challenges and solutions, providing key recommendations for data holders on how to overcome the hurdles experienced in disease registries and health information systems for the routine production of NCD indicators.