Germany National Node Info | European Health Information Portal

Coordinating Institution

ROBERT KOCH-INSTITUT

National node website

Committee for Health Reporting and Health Monitoring (GBEMON)

National Node Description

The Committee for Health Reporting and Health Monitoring (GBEMON) advises the Department of Epidemiology and Health Monitoring of the Robert Koch Institute (RKI), Germany’s National Public health Institute, on the development of medium- and long-term goals and on the design and conceptual development of health monitoring and health reporting. The committee includes 19 stakeholders from different areas of the health system who are affiliated with health sciences/public health, the Public Health Service and autonomous governing bodies within the healthcare system. It meets twice a year under the content-related and organisational responsibility of the RKI.

The Committee has agreed to take on the role of a National Node in December 2019.

Contact person for health information portal

Stefanie Seeling

ROBERT KOCH-INSTITUT

Governance and legal framework

Legal framework and institutional responsibilities

The German Protection against Infection Act (Infektionsschutzgesetz, IfSG) regulates data collection in the area of communicable diseases, including the implementation of the reporting system for notifiable diseases and evidence of pathogens from the responsible health office to the federal state authority and from there to the Robert Koch Institute (RKI). In addition, voluntary registries exist, e.g., the AIDS Case Registry. There is no comparable legal basis across diseases in the area of non-communicable diseases. Data on cancer are collected, checked, analysed and published by the Robert Koch Institute from state-level cancer registries according to the Federal Cancer Registry Data Act (Bundeskrebsregisterdatengesetz, BKRG – currently under revision).

Federal Health Reporting (Gesundheitsberichterstattung, GBE) is carried out by the Robert Koch Institute (RKI) and the Federal Statistical Office, each focusing on different tasks in close consultation. Health reporting in Germany takes place at the federal, state and municipal level. Due to different legal foundations, differences in human and financial resources, and varying data availability, a heterogeneous picture of health reporting results between and within the different levels.

The RKI was officially charged with Health Monitoring by the Federal Ministry of Health in 2007. The monitoring system includes three survey components that repeatedly provide comprehensive information on the population’s state of health and health behaviour, as well as on healthcare services in Germany:

KiGGS – German Health Interview and Examination Survey for Children and Adolescents
DEGS – German Health Interview and Examination Survey for Adults
GEDA – German Health Update (Health Interview Survey) – EHIS, the European Health Interview Survey, is fully integrated in the GEDA survey since 2014/2015

The National Prevention Conference (NPC) is tasked with publishing a cross-institutional Prevention Report every four years, in accordance with the Preventive Health Care Act and section 20d of Book V of the German Social Code (SGB V). The first prevention report was submitted to the German Federal Ministry of Health in 2019, focusing on documentation, performance monitoring and evaluation of the prevention measures put in place by the members of the NPC. The report includes data from the federal health monitoring and findings from health reporting at the federal state level.

Health system performance indicators: In accordance with section 137a of Book V of the German Social Code (SGB V), the development of health care quality assurance instruments and the publication of the results of quality assurance measures with the aim to improve transparency for patients is among the tasks of the Institute for Quality Assurance and Transparency in Healthcare (IQTIG).

Health information strategy

A broad spectrum of health information is collected, analysed and made available in Germany by various actors at different levels (national, state, municipal, corporatist, etc.) who are covered with relevant legislation. There is no formal national health information strategy in Germany.

Health information sources and players

Main players (institutions)

The Robert Koch Institute (RKI) – The RKI is Germany’s National Public Health Institute, the central scientific institution in the field of biomedicine, and one of the most important bodies for the safeguarding of public health in Germany. Among the main tasks are

Identification, surveillance and prevention of diseases, especially infectious diseases
Monitoring and analysing long-term public health trends in Germany
Providing a scientific basis for health-related political decision-making
Federal health reporting

In accordance with the German Protection against Infection Act (Infektionsschutzgesetz, IfSG), the Robert Koch Institute records and analyses data on the occurrence of various infectious diseases in Germany.

The RKI is one among four higher federal institutes within the remit of the Ministry of Health (MoH), which share public health responsibilities. The other institutes are the Federal Centre for Health Education (BZgA), the Paul-Ehrlich-Institut for Vaccines and Biomedicines (PEI) and the Federal Institute for Drugs and Medical Devices (BfArM ). Next to the institutions at the national level, the Public Health Service in Germany comprises institutions at the state level (state health ministries and state offices/institutes of health) and approx. 400 health offices at the municipal level (Öffentlicher Gesundheitsdienst, ÖGD).

The Federal Statistical Office (Destatis) – Germany’s national statistical office is data holder of many health-related statists, including e.g. hospital statistics and statistics on the causes of death. Destatis manages the the online platform for national health data (Information System of the Federal Health Monitoring, IS-GBE) that is open to the public and contains regularly updated health data derived more than 100 different data sources. The database includes regional, national and European health indicators as well as context information (e.g. legislative texts).

Further important players in in the area of health information are:

The Statutory Health Insurance funds – About 90% of the population in Germany is covered by one of approx. hundred Statutory Health Insurance funds. Health insurance companies also conduct research and publish health reports based on the insurance data of their members. Since 2015, routine data are accessible for research upon request on the basis of the Data Transparency Ordinance (DaTraV).
The National Association of Statutory Health Insurance Funds (GKV-Spitzenverband), the central association of the health insurance funds at federal level.
The National Association of Statutory Health Insurance Physicians (Kassenärztliche Bundesvereinigung, KBV), an umbrella organisation of the 17 regional Associations of Statutory Health Insurance Physicians in Germany, and their Central Research Institute of Ambulatory Health Care in Germany (Zentralinstitut für die kassenärztliche Versorgung in der Bundesrepublik Deutschland, Zi), a foundation under civil law that conducts practice-related research with a focus on ambulatory health care of statutorily insured persons.
The Federal Dental Authority (

Data protection

National data/privacy protection regulation and specific data access policies

In Germany, strict data protection regulations apply. In the case of sensitive health data, additional requirements apply in addition to the general data protection requirements, and the processing is only permitted if special justification grounds exist.

The European General Data Protection Regulation (GDPR) contains many so-called opening clauses that give EU member states the freedom to adopt national regulations. The new Federal Data Protection Act (neues Bundesdatenschutzgesetz, BDSG-neu) concretizes and supplements the GDPR. In addition, there are numerous sector-specific regulations on the lawfulness of processing healthcare data in Germany. Legal foundations are laid down in various federal laws (e.g., Protection against Infection Act, Transplantation Act) and in state laws (e.g., hospital laws, health service laws).

In its 2021 report on Digitalization for Health, the German Health System Advisory Council (SVR Gesundheit) has provided an assessment of the current situation in Germany, and identified potential for improvements in research conditions with regards to legal, administrative and technical aspects.

Health information infrastructure and management

Health information infrastructure and management

The data collecting institutions usually manage their own data warehouses. Data derived from more than 100 different sources are available to the public in an online database operated by the Federal Statistical Office: the Information System of the Federal Health Monitoring, IS-GBE). However, not all relevant HI is published and freely accessible through the IS-GBE.

Germany does not have a unique patient or general person identifier. Due to the strict data protection requirements, routine data linkage is not possible in general. However, linkage between routine data and other data sources that are not anonymised is feasible considering specific restrictions, albeit complex with procedures varying between data sources.

Existence of a unique patient identifier or general personal identifier?

Updated on 31 March 2023

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