National Patient Registry

Summary

Strengths Patient Register is widely used to generate knowledge about health and health care utilization's social and regional distribution. Without that knowledge increases the risk that resources for health care are not distributed fairly, that the needs of vulnerable groups, not enough attention or care is not provided on equal terms. Being able to follow people over time, so that the patient register does, can be crucial to find answers to questions related to various diseases. Weaknesses The quality of what is reported varies. For patients leaving hospital level inpatient reported approximately 1.6 million admissions in 2011 which is almost 100 per cent of care sessions. In specialized outpatient (excluding primary care) reported approximately 11.4 million physician visits for 2011. According to the Swedish Association of Local Authorities and Regions (SKL) aggregate statistics performed approximately 13.2 million visits, which means that about 1.7 million visit yet (13 percent). `12` Most of these relate to visits to private caregivers.

Type of data

Data Source
Registry

Type of Study
Cohort study
Other: Patients in Swedish hospital care/open care

Data gathering method
Registries
Other: Information supplied by county councils/hospitals

Access to data

Conditions of access
Data is available for health and social policies and research (downloaded files, DVD/CD. The requested information is released only after the confidentiality agreement / confidentiality clause is regulated by SNBHW. The process is described in detail on NBHW website (in Swedish): http://www.socialstyrelsen.se/register/bestalladatastatistik/bestallaindividuppgifterforforskningsandamal/steg-for-stegvidforskningparegister#bestallning

Type of available data (e.g. anonymised microdata, aggregated tables, etc.)
Anonymised microdata; aggregated tables on request

Formats available
Primarily SAS, Excel and others (SPSS and STATA).

Coverage

Coverage Years of collection, reference years, and sample sizes
In 1984 the Ministry of Health and Welfare together with the Federation of County Councils decided a mandatory participation for all county councils. From 1987 NPR includes all in-patient care in Sweden. NPR includes 50 million discharges for the period 1964 to 2006. The register contains, from 2001, also outpatient visits including day surgery and psychiatric from both private and public caregivers. Primary care is not yet covered in the NPR.

First year of collection
1960

Stratification if applicable
Covers the entire country

Base used for sampling

Geographical coverage and breakdowns
Covers the whole country.

Age range
No age restrictions

Statistical representativeness
Special group, please specify

Coverage of main and cross-cutting topics
The purpose of the National patient registry to track health trends in the population, improve the ability to prevent and treat diseases and contribute to healthcare development. The registry provides data including statistics, research and evaluation. NPR comprise all finalised treatments in inpatient care, data on patients who were hospitalized in the geriatric and psychiatric care, data on patients treated by physicians in that part of the patient care that are not primary care and diagnoses and measures for patients who received care in compulsory psychiatric care.

Linkage

Standardisation
The International Classification of Diseases ICD is a statistical classification with diagnostic codes for grouping diseases and causes of death in order to make the limited statistical summaries and analyzes. The Swedish version is called ICD-10-SE. The classifications ICF and ICF-CY makes it possible to describe a person's functioning, disability and health from a bio-psychosocial model.

Possibility of linkage among databases
By the use of the personal identification number – ID – it is possible to link to other registries such as registers for social care and assistance or register for hospital care or drug use.

Data quality

Entry errors if applicable
The drop-out rate for 2007 has been estimated to less than one percent. Rapid changes of hospital organisation in Sweden make it difficult to estimate the drop-out rate particularly in the areas concerning psychiatric and geriatric care. A quality control of the NPR is performed on the register. The control which includes for example that compulsory variables like personal registration number, hospital, and main diagnosis ares reported. Furthermore is the validity of all variables values tested. If the data is obviously incorrect, correction are made. Finally the corrected information is sent back to the liable unit for approval.

Breaks
A patient can be reported as deceased or alive when discharged. During the period 1964-2003 comparison was made between number reported deceased at the NPR and the date from the Swedish Cause of Death Register (CDR). Of the total number of 1.5 million discharges during that period 97 percent had a date of discharge that differed less than three days according to CDR. In 2007 the corresponding rate were 99.9 percent.

Consistency of terminology or coding used during collection
High level of consistency is promoted. See above.

Governance

Contact information
Anders Jacobsson / SNBHW
Swedish National Board of Health and Welfare
Rålamsvägen 3
11259 Stockholm Sweden Phone: +4675-247 34 48
Email: Anders.jacobsson(at)socialstyrelsen.se
Url: http://www.socialstyrelsen.se/register/halsodataregister/patientregistret/inenglish

Timeliness, transparency
Usually one year and two months