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Health Data Lab

Purpose and goals

Use of Big Data for further purposes ("secondary data") as well as new methods such as machine learning and the use of artificial intelligence are fields that are also rapidly growing in the healthcare sector. The resulting opportunities are being pursued vigorously in the medical field in order to improve public healthcare continuously and the HDL plays a crucial role in this development. The HDL is a successor to the former Data Preparation Centre ("Datenaufbereitungsstelle") which has been enabling data analyses of medical claims data for research purposes since 2013. The establishment of the HDL was initiated by legislature in 2019 through the Digital Healthcare Act while the Data Transparency Ordinance (DaTraV) specifies the corresponding legal regulations. Located at the Federal Institute for Drugs and Medical Devices, the HDL fulfills its tasks independently and autonomously. In the future, researchers from authorised institutions will be able to evaluate data in the controlled analysis environment of the HDL. Authorised users include leading federal organisations that represent the interests of patients and self-help groups for the chronically ill as well as for people with disabilities.The analyses are expected both to result in a variety of scientific publications and to contribute to the improvement of the medical care system.

Analyses based on HDL data result in a wide range of scientific publications that help to improve the medical care people receive.
The data is transmitted in pseudonymised form to the HDL. In such a case, the data can no longer be assigned to a specific person without the addition of further information.
Only authorised institutions will have access to HDL data. These include, e.g. healthcare research institutions and key federal organisations for the representation of patients' interests (cf. Section 303e SGB V).
New methods such as machine learning or the use of artificial intelligence are also gaining ground in the medical field to the benefit of patients. The HDL also plays a crucial role in this development.

New HDL currently being established

The new Health Data Lab is currently in the process of being established which will take place in phases. Unfortunately, no applications can be submitted at this time. First, the legal, technical personnel and organisational measures of the new HDL must be defined and implemented. It is expected that applications can be submitted online in the second half of 2024.

 

Tasks

From the beginning, the HDL will be performing a variety of tasks. Among others, its range of tasks includes quality assurance of the data transmitted by the German National Association of Statutory Health Insurance Funds as well as the trust centre.

The staff at HDL examine incoming applications for data use from authorised institutions in accordance with Section 303e (1) SBG V. Before aggregated analysis results are provided, the specific re-identification risk of the requested data is assessed and minimised while appropriately preserving the intended scientific benefit.
The HDL maintains a public request register with information on the authorised researchers as well as on their projects and project results.

The data transparency procedures are evaluated and further developed on a regular basis. The HDL promotes scientific exploration of the data by giving advice to authorised researchers and offering them training opportunities.

Compared to the former Data Preparation Centre at the German Institute of Medical Documentation and Information (DIMDI), the HDL’s range of tasks has expanded, with the aim of making the data more accessible.

The main innovations include:

  • Secure processing environments: Here, researchers can develop their analyses largely independently and execute them with established analysis tools.
  • Scalability: The new secure processing environments will be scalable and able to process a larger number of Big Data analyses.
  • Faster calculation of results: A powerful data centre with high-performance hardware will be available.
  • Answering specific research questions: This will be possible with the help of a more comprehensive and up-to-date dataset.
  • Faster processing of applications: Among other things, this will be ensured by an electronic application procedure. It is expected that applications can be submitted online in the second half of 2024.