Digital data in medicine
The use of annymised data could optimise health care. Photo: I. Boran/Unsplash
Adapt laws, establish a central structure for data storage, secure and protect sensitive information: In a position paper of the Bavarian Academy of Sciences and Humanities (BADW), an interdisciplinary working group of scientists recommends how research, doctors and medical institutions should deal with patients' personal data. "It is necessary to find a balance between the valuable basic right to protection of sensitive data and the justified interest of society in medical progress through the use of this data," Prof. Dr. Dieter Kranzlmüller summarises the demands. As a computer scientist and Director of the Leibniz Supercomputing Centre (LRZ), he collaborated on the paper "Use of personal data in health care and medical research". "Corona showed - insufficient structures for data collection and current legislation made efficient pandemic management difficult in Germany."
For the study, twelve scientists from all relevant areas of society - in addition to informatics, medicine, law and economics - analyse the current status quo of digitalisation in the health sector, describe hurdles and opportunities, for example, in the use of health data in Bavaria and Germany. The background to this is the constant growth of anonymised, digital data from diagnostics and therapies, from medical studies, surveys, also in databases of health insurances and medical institutions. Their evaluation would offer invaluable potential for optimising health care and developing new technologies or treatment methods. However, according to the authors, this fails because of the heterogeneous infrastructure for recording, anonymising and storing the data, as well as the legal framework. Both prevent the linkage of information with data from other public sources and hinder research. The group therefore calls for
- the establishment of a central infrastructure for the storage and evaluation of data,
- an adjustment of existing laws in Germany and Bavaria,
- a separate law on data use that is in line with Germany's and Europe's laws and regulations
- a new version of Article 27 of the Bavarian Hospital Act for enabling and simplifying the use of anonymised data
The BADW position paper also incorporated experiences from the DigiMed Bavaria research project, in which the LRZ is involved. Together with universities, health and research institutions, the academic computing centre has not only been developing technical requirements and standards for the storage of health data since 2018, but is also collaborating on a set of rules for scientific use. "Initial study results, for example on strokes, metabolic disorders or long-term consequences of COVID-19 point to the relevance of standardised, anonymised health data and convenient access options," says Kranzlmüller. "With the help of data and new evaluation technologies, medicine can become more precise and more individualised, more predictable - this helps everyone involved and also the health system."