Background information
The Public Health Agency of Sweden is tasked with monitoring national strategies on sexual and reproductive health and rights (SRHR) and HIV and AIDS. The strategies contain sub-goals, which can be followed up with indicators. Indicators can be based on different data sources, such as questionnaire data from population surveys or register data. Recently, there has been an increased awareness of cross-referencing within registers, i.e. combining data from different registers on an individual.
Challenge
There are large amounts of register data in Sweden, both from quality registers and authorities. However, many different actors are involved, and it is challenging to get an overall picture of whether there is register data that can form a basis for the desired indicators. The Public Health Agency of Sweden requested a survey of the possibilities for combining register data in order to create indicators for monitoring the sub-goals of the SRHR strategy and the HIV strategy.
Implementation
Initially, Sirona carried out a comprehensive analysis of existing documents and literature relating to the interconnection of registers. This was followed up with an interview study on the technical, legal and quality aspects of interconnection. In addition, experts in the field of SRHR and HIV were interviewed for in-depth linkage to the purpose. To identify specific register data linked to the purposes, all official registers and quality registers in Sweden were mapped. Of these, around 40 registers were deemed relevant for review at variable level, and were mapped on the basis of relevance, cost of data extraction and the possibility of cross-referencing. The work was delivered in a written final report and a database of relevant register data.
Outcome
The project identified 17 quality registers that were deemed relevant for the purpose. They were presented in three categories based on degree of relevance. In addition, 21 government registers were identified and presented in categories based on content focus and responsible authority. A more in-depth analysis of the possibility of interconnection was provided by each register. Approximately 800 variables were included in the database of relevant register data.
Using register data is a great opportunity we have in Sweden thanks to social security numbers. Combining data from several registers further expands the areas of use. The project provided in-depth insight into the possibilities of combining register data in general, and for this purpose in particular. The project resulted in increased knowledge and a concrete basis for the Public Health Agency to work on when creating indicators for national follow-up.
Want to know more?
Want to know more about the project? Contact Cecilia Ringheim, Senior Manager at Sirona.
