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      The Danish health care system and epidemiological research: from health care contacts to database records

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          Abstract

          Denmark has a large network of population-based medical databases, which routinely collect high-quality data as a by-product of health care provision. The Danish medical databases include administrative, health, and clinical quality databases. Understanding the full research potential of these data sources requires insight into the underlying health care system. This review describes key elements of the Danish health care system from planning and delivery to record generation. First, it presents the history of the health care system, its overall organization and financing. Second, it details delivery of primary, hospital, psychiatric, and elderly care. Third, the path from a health care contact to a database record is followed. Finally, an overview of the available data sources is presented. This review discusses the data quality of each type of medical database and describes the relative technical ease and cost-effectiveness of exact individual-level linkage among them. It is shown, from an epidemiological point of view, how Denmark’s population represents an open dynamic cohort with complete long-term follow-up, censored only at emigration or death. It is concluded that Denmark’s constellation of universal health care, long-standing routine registration of most health and life events, and the possibility of exact individual-level data linkage provides unlimited possibilities for epidemiological research.

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          The Danish National Patient Registry: a review of content, data quality, and research potential

          Background The Danish National Patient Registry (DNPR) is one of the world’s oldest nationwide hospital registries and is used extensively for research. Many studies have validated algorithms for identifying health events in the DNPR, but the reports are fragmented and no overview exists. Objectives To review the content, data quality, and research potential of the DNPR. Methods We examined the setting, history, aims, content, and classification systems of the DNPR. We searched PubMed and the Danish Medical Journal to create a bibliography of validation studies. We included also studies that were referenced in retrieved papers or known to us beforehand. Methodological considerations related to DNPR data were reviewed. Results During 1977–2012, the DNPR registered 8,085,603 persons, accounting for 7,268,857 inpatient, 5,953,405 outpatient, and 5,097,300 emergency department contacts. The DNPR provides nationwide longitudinal registration of detailed administrative and clinical data. It has recorded information on all patients discharged from Danish nonpsychiatric hospitals since 1977 and on psychiatric inpatients and emergency department and outpatient specialty clinic contacts since 1995. For each patient contact, one primary and optional secondary diagnoses are recorded according to the International Classification of Diseases. The DNPR provides a data source to identify diseases, examinations, certain in-hospital medical treatments, and surgical procedures. Long-term temporal trends in hospitalization and treatment rates can be studied. The positive predictive values of diseases and treatments vary widely (<15%–100%). The DNPR data are linkable at the patient level with data from other Danish administrative registries, clinical registries, randomized controlled trials, population surveys, and epidemiologic field studies – enabling researchers to reconstruct individual life and health trajectories for an entire population. Conclusion The DNPR is a valuable tool for epidemiological research. However, both its strengths and limitations must be considered when interpreting research results, and continuous validation of its clinical data is essential.
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            The Danish Civil Registration System as a tool in epidemiology.

            The methodological advances in epidemiology have facilitated the use of the Danish Civil Registration System (CRS) in ways not previously described systematically. We reviewed the CRS and its use as a research tool in epidemiology. We obtained information from the Danish Law on Civil Registration and the Central Office of Civil Registration, and used existing literature to provide illustrative examples of its use. The CRS is an administrative register established on April 2, 1968. It contains individual-level information on all persons residing in Denmark (and Greenland as of May 1, 1972). By January 2014, the CRS had cumulatively registered 9.5 million individuals and more than 400 million person-years of follow-up. A unique ten-digit Civil Personal Register number assigned to all persons in the CRS allows for technically easy, cost-effective, and unambiguous individual-level record linkage of Danish registers. Daily updated information on migration and vital status allows for nationwide cohort studies with virtually complete long-term follow-up on emigration and death. The CRS facilitates sampling of general population comparison cohorts, controls in case-control studies, family cohorts, and target groups in population surveys. The data in the CRS are virtually complete, have high accuracy, and can be retrieved for research purposes while protecting the anonymity of Danish residents. In conclusion, the CRS is a key tool for epidemiological research in Denmark.
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              Data Resource Profile: Clinical Practice Research Datalink (CPRD)

              The Clinical Practice Research Datalink (CPRD) is an ongoing primary care database of anonymised medical records from general practitioners, with coverage of over 11.3 million patients from 674 practices in the UK. With 4.4 million active (alive, currently registered) patients meeting quality criteria, approximately 6.9% of the UK population are included and patients are broadly representative of the UK general population in terms of age, sex and ethnicity. General practitioners are the gatekeepers of primary care and specialist referrals in the UK. The CPRD primary care database is therefore a rich source of health data for research, including data on demographics, symptoms, tests, diagnoses, therapies, health-related behaviours and referrals to secondary care. For over half of patients, linkage with datasets from secondary care, disease-specific cohorts and mortality records enhance the range of data available for research. The CPRD is very widely used internationally for epidemiological research and has been used to produce over 1000 research studies, published in peer-reviewed journals across a broad range of health outcomes. However, researchers must be aware of the complexity of routinely collected electronic health records, including ways to manage variable completeness, misclassification and development of disease definitions for research.
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                Author and article information

                Journal
                Clin Epidemiol
                Clin Epidemiol
                CLEP
                clinepid
                Clinical Epidemiology
                Dove
                1179-1349
                12 July 2019
                2019
                : 11
                : 563-591
                Affiliations
                [1 ] Department of Clinical Epidemiology, Aarhus University Hospital , Aarhus, Denmark
                [2 ] Department of Cardiology, Regional Hospital West Jutland , Herning, Denmark
                [3 ] Department of Dermatology, Aarhus University Hospital , Aarhus, Denmark
                [4 ] Department of Clinical Biochemistry, Aarhus University Hospital , Aarhus, Denmark
                Author notes
                Correspondence: Morten SchmidtDepartment of Clinical Epidemiology, Aarhus University Hospital , Olof Palmes Allé 43-45, 8200 Aarhus N, DenmarkEmail morten.schmidt@ 123456clin.au.dk
                Article
                179083
                10.2147/CLEP.S179083
                6634267
                31372058
                533af19d-57c6-42df-bb43-da690cf8d1ee
                © 2019 Schmidt et al.

                This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License ( http://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms ( https://www.dovepress.com/terms.php).

                History
                : 04 July 2018
                : 20 February 2019
                Page count
                Figures: 5, Tables: 6, References: 237, Pages: 29
                Categories
                Review

                Public health
                health care sector,political systems,population health,registries,epidemiology
                Public health
                health care sector, political systems, population health, registries, epidemiology

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