National Board of Health and Welfare

About: National Board of Health and Welfare is a government organization based out in Stockholm, Sweden. It is known for research contribution in the topics: Population & Public health. The organization has 609 authors who have published 969 publications receiving 55020 citations.

External review and validation of the Swedish national inpatient register

Abstract: Background: The Swedish National Inpatient Register (IPR), also called the Hospital Discharge Register, is a principal source of data for numerous research projects. The IPR is part of the National Patient Register. The Swedish IPR was launched in 1964 (psychiatric diagnoses from 1973) but complete coverage did not begin until 1987. Currently, more than 99% of all somatic (including surgery) and psychiatric hospital discharges are registered in the IPR. A previous validation of the IPR by the National Board of Health and Welfare showed that 85-95% of all diagnoses in the IPR are valid. The current paper describes the history, structure, coverage and quality of the Swedish IPR. Methods and results: In January 2010, we searched the medical databases, Medline and HighWire, using the search algorithm “validat* (inpatient or hospital discharge) Sweden”. We also contacted 218 members of the Swedish Society of Epidemiology and an additional 201 medical researchers to identify papers that had validated the IPR. In total, 132 papers were reviewed. The positive predictive value (PPV) was found to differ between diagnoses in the IPR, but is generally 85-95%. Conclusions: In conclusion, the validity of the Swedish IPR is high for many but not all diagnoses. The long followup makes the register particularly suitable for large-scale population-based research, but for certain research areas the use of other health registers, such as the Swedish Cancer Register, may be more suitable.

The Swedish personal identity number: possibilities and pitfalls in healthcare and medical research

Abstract: Swedish health care and national health registers are dependent on the presence of a unique identifier. This paper describes the Swedish personal identity number (PIN) and explores ethical issues of its use in medical research. A ten-digit-PIN is maintained by the National Tax Board for all individuals that have resided in Sweden since 1947. Until January 2008, an estimated 75,638 individuals have changed PIN. The most common reasons for change of PIN are incorrect recording of date of birth or sex among immigrants or newborns. Although uncommon, change of sex always leads to change of PIN since the PIN is sex-specific. The most common reasons for re-use of PIN (n = 15,887), is when immigrants are assigned a PIN that has previously been assigned to someone else. This is sometimes necessary since there is a shortage of certain PIN combinations referring to dates of birth in the 1950s and 1960s. Several ethical issues can be raised pro and con the use of PIN in medical research. The Swedish PIN is a useful tool for linkages between medical registers and allows for virtually 100% coverage of the Swedish health care system. We suggest that matching of registers through PIN and matching of national health registers without the explicit approval of the individual patient is to the benefit for both the individual patient and for society.

The new Swedish Prescribed Drug Register—Opportunities for pharmacoepidemiological research and experience from the first six months

Abstract: The new Swedish Prescribed Drug Register-Opportunities for pharmacoepidemiological research and experience from the first six months.

The completeness of the Swedish Cancer Register: a sample survey for year 1998.

Abstract: Introduction. The Swedish Cancer Register (SCR) is used extensively for monitoring cancer incidence and survival and for research purposes. Completeness and reliability of cancer registration are thus of great importance for all types of use of the cancer register. The aim of the study was to estimate the overall coverage of malignant cancer cases in 1998 and to reveal possible reasons behind non-reporting. Methods. We selected all malignant cancer cases in the Hospital Discharge Register (HDR) from 1998 and compared these records to those reported to the SCR. There were 43 761 discharges for 42 010 individuals of whom 3 429 individuals were not recorded in the SCR. From these 3 429 records we randomly selected 202 patients for review of their medical records to determine whether they should have been registered on the SCR as incident cases in 1998. Results. About half of the 202 cases (93 malignant and 8 benign) should have been reported, which translates into an additional 1 579 malignant cases (95% CI 1 3491 808), or 3.7% of the cases reported in 1998. The crude incidence rate for males and females combined would increase from 493 per 100 000 to 511 (95% CI 508514) if these cases were taken into account. Conclusion. The overall completeness of the SCR is high and comparable to other high quality registers in Northern Europe. For most uses in epidemiological or public health surveillance, the underreporting will be without major impact. However, for specific research questions our findings have implications, as the degree of underreporting is site specific, increases with age, and does not seem to be random, as diagnoses without histology or cytology verification are overrepresented. An annual comparison of the SCR against the HDR could point to hospitals, geographic areas or specific diagnoses where organizational and administrative changes should be introduced to improve reporting.