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.
Related (in German only):
Argumente für die Einrichtung eines Nationalen Mortalitätsregisters
Ulrich Mueller
RatSWD Working Paper No. 40
