Combining health claim data with routine clinical care data

The project aims to deliver a set of coherent and balanced recommendations, that point toward solutions for linkage of health claim data with clinical data for clinical research purposes. Such linkages are currently hindered by ethical-legal concerns. As a consequence, the utility of health claim data in clinical research is very limited. By combining high quality medical data from registries, such as health claim data, with data obtained from clinical care, such as electronic health records, a wealth of information will become available for use in clinical research projects that allows more optimal clinical research into disease prevention and treatment.

A proof-of-principle study will be performed in which the first available technology will be identified for data linkage, and the ethical-legal concerns. Next, a Think Tank of experts in the field and citizens will actively assist the research team and will explore feasible solutions for linking nationwide health claim data with primary care electronic health record data. A unique approach will be used, in which stakeholder focus groups will be brought together and interviews as empirical sources into balance with theoretical insights yielded from ethical-legal and technical analyses of the literature on data linking.

A set of coherent and balanced commendations that will results from this project will be disseminated to stakeholders via recommendations documents, infographics, and presentations. The field of cardiology will be used as testing ground. Yet, the insights gained can be applied to linkages with many data sources and to the broader field of clinical epidemiological research and applications in health care.

The project will pave the way towards more optimal utilization of health claim data in clinical research projects. This will contribute to big data analytical solutions that support maintenance of health and functioning, and optimise disease treatment and management.