Bitkom and broad alliance of associations demand access to health data for private research

  • In a joint paper, eight associations support the possibility of voluntary data sharing for research purposes as provided for in the draft Patient Data Protection Act.
  • They also criticise that the most efficient players in the research-based healthcare industry should be excluded from the right to submit applications for the envisaged research data centre.

Berlin, 18th May - From the diagnosis to therapy of rare or chronic diseases - digital technologies can improve care and save lives. Health data are a necessary basis for the development and application of the right solutions. However, the availability and use of such data in Germany is still very limited.

Against this background, the associations of the eHealth Alliance welcome in their joint paper that the draft for the Patient Data Protection Act creates for the first time the legal basis for voluntary data sharing (also known as "data donation") via the electronic patient record (ePA). This will enable citizens to make a voluntary contribution to research in the future.

Increase data availability for research

At the same time, the associations criticise the narrow restriction to public research, which considerably reduces the expected added value for patients. After all, a total of around 75 percent of research projects are funded by research-based industry.

For this reason, the associations are jointly calling for the draft law to create regulated access for private research. This would also be in line with the recommendations of the Data Ethics Commission, which calls for an improvement in controlled access to personal data. Last but not least, lawmakers could send a clear signal that the development of high-quality and innovative health solutions in Germany is desired and supported.

Uses of health data

In their paper, the associations illustrate the added value of the use of research data in the health sector with six examples ranging from AI-based early cancer detection to smart and safer medical technology. For more information access the position here.  

Kontaktbild von Ariane Schenk

Dr. Ariane Schenk

Bereichsleiterin Health & Pharma
Bitkom e.V.