7.I. Workshop: Data for health services research: what can we learn from other countries?

Abstract

High-quality, comprehensive, and timely data is essential for health services research. Increasingly, health services research requires using not only individual datasets but linked data, which use common key variables to bring together information from multiple data sources. This can include clinical data (e.g., results from clinical examination and diagnostic tests), routinely collected data on utilization (e.g., insurance claims) and further, partially unstructured data produced in daily life - as well as data from other areas (economic, environment, social). The need for linked data is reinforced by digital transformation in health care around the world and the availability of new data resources (‘big data') as well as the recent COVID-19 pandemic. We carried out an international comparison of data for health services research - both regarding databases with individual level data as well as those on a geographical or population level. We asked experts from more than ten countries to provide feedback on data linkage initiatives to determine the content of the data, how the data is collected, how the data is linked and cleaned, how the data is stored, and how the data is used for research. In some countries, data collected in the health system is largely fragmented and there is no unique identifier to facilitate linkage across datasets. In other countries, the government supports data linkage initiatives and provides summary data for all public data (down to the census) which can be used on request for projects that are in the public interest. The development - and possible linkage - of relevant databases is closely related to the organizational design of the health care system, especially the structure of service provision and the corresponding billing and reimbursement mechanisms. The accessibility of these databases is also influenced by data protection regulations and standards, including cultural considerations. The objective of this research is to identify important and potentially useful case studies that could provide insights into the different approaches to data linkage that exist worldwide and to perhaps provide ideas for future more or less ‘disruptive' solutions to countries undertaking the ambitious endeavor of health data linking. Therefore, we designed the analysis in such a way that findings on data structure and flow in selected countries are, to the extent possible, system-independent and transferable, while simultaneously also capturing some country-specific regulatory frameworks. This workshop will explore how countries govern and use data generated in the health system and what additional insights about best practices can be learned from the international experience. The workshop will begin with a presentation about the analytical framework, followed by a panel discussion of the experience from country case studies, continue with an audience contribution, and wrap up with a conclusions round.Key messages Data linkage initiatives that bring together information from clinical, utilization, social, and other data sources are increasingly important in health services research.An international comparison of data linkage initiatives provides best practices for data linkage that could be applied in individual country settings.