The SRQ is a Swedish national quality registry that aims to dramatically improve health for people with chronic disease.
More than simply a repository for data, this registry-supported care and learning system enables a synergistic approach to the improvement of health, clinical practice, public reporting, and research. It starts with the patient reporting his or her own symptoms, health, and quality of life prior to a visit. These self-reported data are synthesized and graphically displayed to provide a snapshot of the current health status and a longitudinal image of personal health and treatment trends over time. These snapshots are supplemented by the provider, who adds clinical examination and laboratory data. The result is a clinical decision support tool (a dashboard) that aims to allow the patient and the provider to work together to optimize health according to what matters to the patient. The structured data from each visit is immediately exported to the national registry, thereby facilitating collaboration and leveraging the use of the data for improving patient population health.
The Swedish Rheumatology Quality Registry system uses three modules (patient, clinical, and national) that are consistent with health information technology (HIT) and legal infrastructure and act as the essential elements and functionalities benefitting different end-users.
Patient reported outcomes (PROMs) relevant for the patient’s disease and life situation are captured in the patient module known as PER (Patientens Egen Registrering, or Patient’s sElf Registration) and then visualized to inform and prepare the patient for the clinical visit by showing a graphic display of the disease course and response to treatments. Patients can access the module via a secure national web portal called My Health Care Contacts or through a computer/tablet in the clinic’s waiting room
The clinical module comprises a clinical decision support system and a local SRQ database. It displays the patient data from PER and enables the provider to import these data and to enter their own clinical data, such as clinical examinations and global scoring of disease activity. Data on prescribed medications and current patient outcomes are shown on a dashboard for outcome evaluation and decision-making with the patient. Both physicians and nurses use the clinical decision support during clinical encounters. The clinical module also displays group data to show outcomes for the individual provider’s patient panel, or the entire clinic, as a data-based foundation for change initiatives to improve health for patient populations.
The data reported from the clinical modules of the rheumatology clinics throughout Sweden flow into a national quality registry that stores individualized data on patients, interventions, and outcomes. The national module includes several feedback systems, displaying data analyses for quality of care assessment, performance benchmarking, public reporting, and industry-commissioned analyses. With IRB approval, data sets can be exported from the national database for research.
Source: Enabling Uptake of a Registry-Supported Care and Learning System in the United States: A Report to the Robert Wood Johnson Foundation from Karolinska Institutet and The Dartmouth Institute. 2014
Quality Registries in Sweden
Quality registries are one of the main drivers of health systems improvement in Sweden. The Swedish association of local authorities and regions (SALAR), the member organization of county councils and municipalities responsible for all care supports the development and maintenance of national quality registries through direct funding and through six Regional Register Centers supporting quality registries with common competencies and infrastructures to increase cost efficiency. They provide services such as patient participation and reporting of PROs, technical consultancy, certification consultancy, analytical work and sharing of best practices in using registry data for clinical quality improvement. The Swedish government has made an agreement with all care providers through SALAR to invest a total of 220 million USD in the national quality registers during 2012 – 2016. A number of effect goals have been set, amongst them a significantly improved health in 10 large disease groups at the end of the period.
A certification system has been set up to increase the standards of quality registries detailing what competencies and deliveries the registries should attain on a scale
Among the 104 national quality registers in Sweden, the SRQ registry leads in terms of innovative ehealth services, patient-centeredness, decision support functionalities, information technology (IT) development, and integration.
Source: Appendix 1: The Swedish e-Health Landscape Surrounding the SRQ Registry. In: Enabling Uptake of a Registry-Supported Care and Learning System in the United States: A Report to the Robert Wood Johnson Foundation from Karolinska Institutet and The Dartmouth Institute. 2014