Overview of Swedish register data for health research

抄録

Sweden has a long history of collecting population-based administrative and healthcare data and using them for research. These data constitute a central resource for research, enabling population-wide studies with decades of follow-up, which would have been difficult to conduct otherwise. This paper provides an overview of Swedish register data commonly used in health research, along with ethical considerations and the process for accessing these data. Key national data include non-health registers managed by Statistics Sweden and the National Board of Health and Welfare for healthcare, encompassing deaths, and social care service data. National quality registers offer disease-specific information to improve patient outcomes, regional healthcare databases cover healthcare data not included in national data, and datasets maintained by other governmental organisations provide unique information, such as nationally notifiable infectious diseases, military conscription assessments of young men from 1969, crime records and road and traffic data, including accidents. Strengths of Swedish register-linkage data include near-complete population coverage, deterministic linkage using personal identity numbers and rich non-health information, including but not limited to demographic, socioeconomic and geographic information; educational history; use of social benefits such as sick leave and livelihood support; and generational and family ties. Limitations such as incomplete primary care coverage in national registers and variations in data quality across sources were noted. Overall, Swedish register data offer exceptional opportunities for health-related research, although limitations and characteristics of source data need to be understood, and ethical approval must be obtained for application in research.