Protection against identification, data protection and data security
Each year, the HDL receives the pseudonymised billing data of the statutory health insurants from the German National Association of Statutory Health Insurance Funds.
According to GDPR, Article 4, paragraph 5, "pseudonymisation" means "the processing of personal data in such a manner that the personal data can no longer be attributed to a specific data subject without the use of additional information, provided that such additional information is kept separately and is subject to technical and organisational measures to ensure that the personal data are not attributed to an identified or identifiable natural person." Thus, uniquely personal identifying characteristics such as name, address or the insured person number are not included in the data. Pseudonymisation takes place before data transmission to the Health Data Lab. The Robert Koch Institute assumes the tasks of an independent trust centre within the framework of this pseudonymisation procedure.
Data protection and data security are ensured at the HDL by technical and organisational measures in accordance with the current state of the art. These measures are developed and reviewed in consultation with the Federal Commissioner for Data Protection and Freedom of Information (BfDI) and the Federal Office for Information Security (BSI).
The purpose of transmitting and collecting the data is to enable systematic research into healthcare services documented and billed in Germany. The available healthcare data includes data on both outpatient and inpatient care. In the coming years, this dataset will be expanded to include data from service providers from other fields as well. This encompasses other groups of persons who provide healthcare services to persons insured by statutory health insurances.
Graphic on the data available in the Health Data Lab broken down by sectors:
Outpatient Sector, Inpatient Sector, Health Data Lab Records, Master Data, Other Sectors. For each sector the following details are listed: Outpatient Sector: Diagnoses (ICD), procedures (OPS), type of treatment: beginning/end, case costs Inpatient Sector: Treatment and duration, care, ventilation hours, pre- and post-hospital care services and charges, diagnoses (ICD) & procedures (OPS) Master Data: Year of birth, sex, health insurance company number, postal code of residence Other Sectors: Data characteristics on remedies and aids, ambulance services, home healthcare, midwife assistance and digital health applications, ePAThe extended dataset for analyses (currently under construction)
Note on expansion of the dataset
The new HDL is currently in its establishment process which will take place in phases. Within the framework of the German morbidity-oriented risk-structure compensation scheme (Morbi-RSA), data for the reporting years 2009 to 2015 have already been transferred to the former Data Preparation Centre by the Federal Office for Social Security. The HDL will adopt this dataset. A new, slightly expanded dataset with data from the reporting year 2016 will be transferred directly by the National Association of Statutory Health Insurance Funds to the HDL for the first time. New data fields (in accordance with Section 3 (1) DaTraV) will be added gradually in subsequent years. Structural changes will result in a new data body and the calendar year 2024 marks the first time that the entire dataset as specified by law will be transmitted for the reporting year 2023. This will include the services offered by other service providers as well as further information on inpatient care.