Joint Programming Initiative

More Years, Better Lives

The Potential and Challenges of Demographic Change

National Patient Registry
Nationella patientregistret

Topic
Health and Performance
Relevance for this Topic
Country Sweden
URL
More Topics

Governance

Contact information

Anders Jacobsson / SNBHW
Swedish National Board of Health and Welfare
Rålamsvägen 3
11259 Stockholm
Sweden
Phone: +4675-247 34 48
Fax: +46-75–247 32 52
Email: Anders.jacobsson(at)socialstyrelsen.se
Url: www.socialstyrelsen.se/.../inenglish

Timeliness, transparency

Usually one year and two months

Type of data


Registry

Type of Study

Cohort study


Patients in Swedish hospital care/open care

Data gathering method

Registries


Information supplied by county councils/hospitals


Access to data


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

Conditions of access


Formal agreement needed. The agency will charge 960 SEK (excluding VAT) per hour for the hours spent on an order. This applies to both the time judging data security issues and data distribution. www.socialstyrelsen.se/.../bestallaindividuppgifterforforskningsandamal


Around two months (or more in times of temporary overload of applications)


Anonymised microdata; aggregated tables on request


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


General information in English, but the variables and datasets are in Swedish. See: http://www.socialstyrelsen.se/register/halsodataregister/patientregistret/inenglish


Coverage


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.


1960


Covers the entire country


Information to NPR is delivered to the Centre for Epidemiology (EpC) at the National Board of Health and Welfare from each of the 21 county councils in Sweden. At present, the NPR is updated once a year.


Covers the whole country.


No age restrictions


All patients in hospitals including external medical treatment in public and private settings.


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.


Reports only available in Swedish. For reference see: www.socialstyrelsen.se/.../patientregistret


Linkage


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.


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


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.


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.


High level of consistency is promoted. See above.


Applicability


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.


  • The information about this dataset was compiled by the author:
  • Kenneth Abrahamsson
  • (see Partners)