Quality registries
Data included in a quality registry is collected as part of a patient's course of treatment, where data is retrieved from the official patient management systems (e.g. in a journal). The data is used to analyze and measure the quality of patient care that is performed, and is an important indicator of quality in health care. The clinical record systems are poorly suited to create reports and perform statistical analyzes, therefore data is transferred to a separate register solution (database).
Data must be well structured so that it can be quantified more easily in a report or in a statistical analysis. Quality registers are often of very long duration and data collection takes place over many years. This is because the main purpose is to capture change in quality of treatment over time.
In parallel with establishing a quality registry, one can also seek consent from patients to do research on the data collected. This requires setting up a so-called combined "quality and research registry". Legally, a quality registry is formalised, but in addition an associated consent registry is established to keep track of "consents to research". This means that you can store data for use within the main purpose (which is quality assurance), while simultaneously having the possibility to use the same data for research purposes. The major advantage is that you only have to collect data once, and you can store data in one and the same IT solution. This promotes privacy by minimising (limiting) the number of copies of data stored.
Quality registries may be anchored locally at a single hospital, but can also be more comprehensive, collecting data from several institutions. There are also national medical quality registries which have special formalisation routines and are handled by the national service environment for quality registries. A local quality registry can be "national" in terms of coverage, even if it is anchored locally. Coverage refers to how many of the patients within a patient group in Norway are included in the register. For a national medical service, all patient consultations may be performed at one hospital. Thus, one obtains national coverage without having to undergo a lengthy formalisation routine. In order to become a national medical quality registry, one must go through a longer approval process from the national service environment and from the Directorate of Health. A number of requirements must be met in order to achieve this status.