Sweden's health data goldmine (original) (raw)
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Registers of the Swedish total population and their use in medical research
European Journal of Epidemiology, 2016
The primary aim of the Swedish national population registration system is to obtain data that (i) reflect the composition, relationship and identities of the Swedish population and (ii) can be used as the basis for correct decisions and measures by government and other regulatory authorities. For this purpose, Sweden has established two population registers: (i) The Population Register, maintained by the Swedish National Tax Agency ("Folkbokföringsregistret"); and (ii) The Total Population Register (TPR) maintained by the government agency Statistics Sweden ("Registret över totalbefolkningen"). The registers contain data on life events including birth, death, name change, marital status, family relationships and migration within Sweden as well as to and from other countries. Updates are transmitted daily from the Tax Agency to the TPR. In this paper we describe the two population registers and analyse their strengths and weaknesses. Virtually 100% of births and deaths, 95% of immigrations and 91% of emigrations are reported to the Population Registers within 30 days and with a higher proportion over time. The overcoverage of the TPR that is primarily due to underreported emigration data has been estimated at up to 0.5% of the Swedish population. Through the personal identity number, assigned to all residents staying at least 1 year in Sweden, data from the TPR can be used for medical research purposes, including family design studies since each individual can be linked to his or her parents, siblings and offspring. The TPR also allows for identification of general population controls, participants in cohort studies, as well as calculation of follow-up time. History of the Population Registers The Church of Sweden has kept local registers of their parish members since the 17 th century [2]. This procedure allowed the church, and consequently the Swedish State, to collect taxes and enrol soldiers. In 1991, the Swedish Tax Agency took over the responsibility for the national registration and the Population Register from the Church of Sweden. The Tax Agency is organised around local units collecting data (Figure 2). Local data are then stored in the national PR-Tax. Most people who are born in Sweden or move to the country are recorded in the national PR-Tax (exceptions are described in the section about the PIN). On entering the register, the individual is assigned a PIN [1]. The PR-Tax also distributes population information (including address information) to various government agencies. For these reasons, Swedish residents moving within Sweden have to notify the Tax Agency when they change their address. Five times a week the Tax Agency distributes new data from the PR-Tax to relevant government authorities, among them the Swedish Migration Board, the Swedish Pension Agency and Statistics Sweden (Figure 2). Each year, approximately three million updates are sent from the Swedish Tax Agency. Transmission of data to other government agencies is regulated by law (SFS1991:481 and SFS2001:100). Certain updates (primarily names and addresses) of the PR-Tax are accessible to a number of actors, including private customers through a service called "SPAR" (the Swedish Population and Address Register). This service allows, for instance, mail order companies to contact a large number of potential customers. Government agencies, banks and insurance companies have access to additional data, whereas some highly sensitive data are only distributed to the Police and the Customs Office. The TPR (Swedish: Registret över TotalBefolkningen, RTB) started in 1968 after a large part of the population data was computerised in 1967. A complete year-specific version of the TPR is available for each year since 1968 (certain data are actually available since 1961). The variables in the PRs have remained relatively constant since 1968 (Table 1), with a few changes. Until 1973, birth number was only recorded for births within a marriage while birth order signifies the order of births in the same mother. In 1974, regulations on divorce shortened the administrative time, resulting in an increase in the number of registered divorces in 1974 and 1975. Rules for citizenship of children whose parents had different citizenship changed in 1975. Regulations for a widow's pension were changed in 1990, which led to a substantial increase in the number of married couples the year before (1989).
Health in Sweden: The National Public Health Report 2005
Scandinavian Journal of Public Health, 2006
Report 2005 is number six in a series of public health reports commissioned by the Swedish government. The purpose of these reports is to monitor and analyse the development of health in various groups of the population. By doing this the public health reports form a basis for evaluation and improvements of health policies. Overall social change, living conditions and behaviours are of major significance for health; and in the Report these are related to health development. The prerequisites for epidemiological research as for monitoring public health are particularly good in Sweden thanks to several extensive national health registers of high quality, which also include unique personal identification numbers for each citizen. The national Public Health Report is a fine illustration of the use of registers and we hope the Report will be of interest to an international audience. The Report is intended primarily for politicians at national, regional and local levels whose decisions, in different ways, can create the preconditions for favourable public health development. The Report is also directed towards organizations and authorities responsible for improving the health of the population, towards local public-health workers, towards health-oriented study programmes in uppersecondary schools and universities, and towards interested members of the public. Bearing this in mind some parts of the Report-e.g. some fact boxes of descriptions of methods and measures-might seem rather basic especially to an international scientific public.
Database on Danish population-based registers for public health and welfare research
Scandinavian Journal of Public Health, 2011
Population-based studies with information from registers can take place in Denmark due to linkage between registers at the individual level by means of a unique personal identification number (CPR-number), which all persons with residence in Denmark have. Registers with information on health can be linked to other population registers containing information on, for example, transfer payments, education, housing, income, and socioeconomic position. This article introduces a database and search engine, which is available for public health and welfare researchers as an aid to seek information on the content of important Danish registers.
Detaching data from the state: Biobanking and building Big Data in Sweden
LifeGene, a biobank and research infrastructure, is Sweden's largest biomedical project. Designed for research on gene–environment interactions, the project aimed to collect data and biological samples from 500 000 individuals. The directors pointed to Sweden's universal health-care system, national registries and pro-science citizenry as indicative of the nation's unique suitability for this ambitious project. As researchers explained, in Sweden, large-scale national collection of personal data has generally proceeded with little debate. In this view, the historical legacy of social engineering and close ties between science and the state has led to a popular sense of trust in the state to collect and use information in the best interest of the population. However, LifeGene is more than just a continuation of information-gathering-as-usual in a country where the government has long kept track of its population's health and social characteristics. With LifeGene, the construction of surrounding research infrastructures, and a reworking of national data protection legislation, Swedish researchers and authorities are now purposely building a framework for moving from data-as-usual to Big Data and the Big Value it promises to deliver. Drawing on ethnographic fieldwork with Swedish researchers and data managers, this article will examine the legal, social and infrastructural challenges of Sweden's bid for Big Data.
BMC Musculoskeletal Disorders
Background: Sweden offers a unique opportunity to researchers to construct comprehensive databases that encompass a wide variety of healthcare related data. Statistics Sweden and the National Board of Health and Welfare collect individual level data for all Swedish residents that ranges from medical diagnoses to socioeconomic information. In addition to the information collected by governmental agencies the medical profession has initiated nationwide Quality Registers that collect data on specific diagnoses and interventions. The Quality Registers analyze activity within healthcare institutions, with the aims of improving clinical care and fostering clinical research. Main body: The Swedish Hip Arthroplasty Register (SHAR) has been collecting data since 1979. Joint replacement in general and hip replacement in particular is considered a success story with low mortality and complication rate. It is credited to the pioneering work of the SHAR that the revision rate following hip replacement surgery in Sweden is amongst the lowest in the world. This has been accomplished by the diligent follow-up of patients with feedback of outcomes to the providers of the healthcare along with post market surveillance of individual implant performance. During its existence SHAR has experienced a constant organic growth. One major development was the introduction of the Patient Reported Outcome Measures program, giving a voice to the patients in healthcare performance evaluation. The next aim for SHAR is to integrate patients' wishes and expectations with the surgeons' expertise in the form of a Shared Decision-Making (SDM) instrument. The first step in building such an instrument is to assemble the necessary data. This involves linking the SHARs database with the two aforementioned governmental agencies. The linkage is done by the 10-digit personal identity number assigned at birth (or immigration) for every Swedish resident. The anonymized data is stored on encrypted serves and can only be accessed after double identification. Conclusion: This data will serve as starting point for several research projects and clinical improvement work.
Health problems in a Swedish county—what can we learn from official sources?
Social Science & Medicine. Part C: Medical Economics, 1981
Ahshucr-In view of the epidemiological responsibility that, according to the new Swedish health legislation. will be laid upon the local county councils. there will be increasing demands to identify and monitor the health status of the local population, e.g. the commune. As part of a large scale collaborative project between a central Swedish health planning institute, a local county council and a research department. this paper focuses on the availability and usefulness of the official statistics. The process of community diagnosis is discussed and illustrated by means of a regional mortality display. It is argued that regional epidemiological data will be of major importance for the future planning of preventive programmes where also non-medical solutions are mandatory.