14 October 2016

Common principles for quality registry research

The regional registry centres and the regional cancer centres have prepared this document based on the following principles for how quality registry data should be used in research.

Openness

A registry used in research and monitoring contributes to better healthcare. The quality of the registry is improved when data is analysed and discussed.

Quality

The registry data must maintain sufficient quality in order to be used for research. The quality registry contains important information for healthcare, but the data in the different registries may have varying levels of suitability for use in scientific analyses.

Data quality, patient composition on care units, interrupted time series, etc. must be taken into consideration. Adequate statistical methods must also be used in the analysis of data. Incorrect use of registry data could lead to incorrect conclusions, which in the long run could harm patients and decrease willingness to report to the registry.

Integrity

The integrity of the care recipients must be protected through compliance with laws and regulations and by ensuring that the registry has routines for information security and disclosure. This is essential for patients who want to be in the quality registry.

Collaboration

Quality register data has been compiled through major initiatives in healthcare, partly through the efforts of the people who have been involved in the work with the central registry, i.e. steering committee members and registrars.

It is important to be aware of the registry’s strengths and any weaknesses when interpreting data. It is therefore recommended that researchers cooperate with registrars and steering committee members, who are familiar with the relevant registry.

Information on potential weaknesses in data can then be communicated to the registry, faulty analyses can be avoided, and the research can be a key stimulus for the continued development of the registry.

Contact details and additional information about the quality registries

The easiest way for interested researchers to get information on which registries exist, what information they contain, and contact details and links to each registry is via the list of the Swedish National Quality registries on our website:

List of all Swedish National Quality Registries

You should then contact the relevant registry organization. The registry’s registrar and steering committee are the most equipped to answer questions about how it can be used.

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