Key concepts and principles for design and critical interpretation of Nordic register-based studies

The ultimate aim of this initiative is to improve health and living conditions for people in the Nordic region. There is a long tradition in these countries of maintaining well-established systems for health and other parts of the welfare state. National population-based registers for administrative purposes have existed for decades. These include information on family, residence, education, work and health aspects, and cover the entire populations. Register data are thus not primarily collected for research, and it is critical to protect and guarantee individual privacy with respect to how personal data are used. As data are already available, important research can be done in a cost- and time-effective manner, while maintaining personal privacy. Data are combined by using the personal identification number, but this linkage is normally done by the authorities. By using registers covering the entire populations or large parts of them, a unique and powerful resource for answering a multitude of research questions is provided.

This two-week course will be given twice during the period 2018-2020. The aim is to provide high-quality education for the next generation of researchers on how registers can and should be used for research purposes. The course covers important aspects of how to identify and formulate problems of relevance for this kind of research, how to design studies, request data from authorities and how to critically interpret the results. Ethical aspects and legal principles are an important part of this process. Aspects of how to communicate research results with the public will also be included in the course.

The proposed course is of relevance for all research disciplines that use registers in research, such as epidemiology, public health, sociology, demography, psychology, statistics, health economics, and other medical and social sciences. Doctoral students and those who have recently completed their doctoral education will be eligible to apply. Teachers taking part are from universities in the different Nordic countries; all have long experience of conducting this kind of research are all competent teachers. The course will be managed by Karolinska Institutet in Stockholm. This initiative has the potential to contribute to research education in how to perform high-quality research on Nordic registers, which will ultimately provide policy-makers and key actors with new knowledge.