The German Data Forum (RatSWD) has decided to install a working group for the preparation of a national death index / national mortality database. The aim of the working group is (a) to recommend general data quality and procedural standards and (b) to give specific recommendations how to implement these standards in a future German national death index.
A national death index covers all deaths in a country registering vital data, basic biographical information and a detailed documentation of the cause(s) of death for each case. Many other countries do have such national death indices, some already for decades.
A national death index is an indispensible infrastructure for social, public health and medical research. Registration of vital events plus cause-of-death documentation is the oldest and most extensive public health surveillance system. International compatibility of such databases opens many options for morbidity and mortality risk identification, but requires more common features than proper use of the International Classification of Diseases (ICD).
General data quality and procedural standards recommendations should at least cover these areas: (1) Speed (In the US National Death Index data records are available only 18-24 months later), (2) Completeness (in smaller European countries, a substantial proportion of the population spends some years abroad, thus, there should be an exchange of mortality data between countries of birth); (3) Record linkage capacity; (4) Multi-causality features in the cause-of-death documentation;(5) Convertibility between coding systems; (5) Efficient, Information preserving privacy protection features; (6) Data quality documentation; (7) High bioethics standards.
Specific recommendations will have to consider the federal system of government in Germany with three layers of government (federal, state, municipal) both in legislation and administration, with universal, but very decentralized registration of every birth and death and all residents and moves, and a completely separated processing of death certificates.
Status: The WG has completed its work successfully.
Reports and recommendations
- 24 March 2011
Ein Nationales Mortalitätsregister für Deutschland
Bericht der Arbeitsgruppe und Empfehlung des Rates für Sozial- und Wirtschaftsdaten (RatSWD)
- 3 December 2010
Empfehlung des Rates für Sozial- und Wirtschaftsdaten (RatSWD) zum Aufbau eines nationalen Mortalitätsregisters
Members of the Working Group
- Peter Dicke / Federal Administrative Agency (Bundesverwaltungsamt) – Bonn
- Manfred Dietel / Department of Pathology, Charité – Universitätsmedizin Berlin
- Stefan Gawrich / Cancer Registry, Hesse State Health Office – Dillenburg
- Karl-Heinz Jöckel / Institute of Medical Informatics, Biometrics and Epidemiology, Medical School & University Hospital – Essen
- Stefanie Klug / Head Cancer Epidemiology, University Cancer Center, University Hospital Carl Gustav Carus Dresden at the Technical University Dresden
- Wolfgang Löwer / Institute of Public Law, Law School, Rheinische Friedrich-Wilhelms-Universität – Bonn
- Sabine Luttmann / Bremen Institute for Prevention Research and Social Medicine – Universität Bremen (Co-Chair)
- Ulrich Mueller / Institute of Medical Sociology and Social Medicine, Medical School – Philipps-University – Marburg (Co-Chair)
- Torsten Schelhase / National Statistical Office – Wiesbaden
- Mechthild Vennemann / Institute of Forensic Medicine, Medical School – Westfälische Wilhelms Universität Münster
- Thomas Ziese / The Robert Koch Institute – Berlin
- Martina Schmidt-Stolte / Institute of Medical Sociology and Social Medicine, Medical School – Philipps-University – Marburg
- Article of the British Medical Journal on the working group’s workshop on 5 Mai 2010 in Berlin
Germany moves closer to establishing national mortality register
- Article in DIE ZEIT by Josephina Maier, 27 Januar 2011
Hilfe zum Leben
Mit einem einheitlichen Verzeichnis aller Todesfälle in Deutschland könnten Mediziner Gesundheitsrisiken besser abschätzen.