New position paper by the Working Group on Bio IT and Big Data
Digital healthcare sector – BIO Deutschland calls for changes in data protection laws
On 14 December, the Working Group on Bio IT and Big Data of BIO Deutschland, the sector association of the biotechnology industry, released a position paper on big data applications in healthcare. The working group’s experts call for German data protection laws to be adapted to the EU’s new General Data Protection Regulation in such a way that creates a legal basis for using health data to conduct research and development and to enhance patient well-being. The association also recommends harmonising data protection laws, integrating medical data through the development of interoperability structures and swiftly introducing all electronic health card applications.
“Big data is capable of creating added social value on a broad scale, particularly if digital data can help advance innovative research. There is huge potential here to develop better research methods, in particular to combat chronic and rare diseases. Revisions to data protection laws are therefore urgently needed,” said Martin Pöhlchen, chairman of the Working Group on Bio IT and Big Data. “Ensuring the interoperability of available data is also critically important. Only by bringing together different information is it possible to make major new discoveries about the origins and progression of diseases and thus develop new diagnostic and therapeutic methods. It is thus essential to swiftly introduce electronic health card applications,” added Pöhlchen.
The association commented: “Pulling together and comparing anonymised genetic, clinical and epidemiologic data makes it possible to analyse in a targeted way whether known genetic variations are the cause of a disease or instead need to be re-examined. Researchers have, for example, succeeded in gaining new insights into the influence of a gene that – when changed – causes breast cancer.” It also stressed the importance of leveraging the knowledge and expertise of biotech companies to develop further the electronic health card and the associated telematics infrastructure.
The Working Group on Bio IT and Big Data of BIO Deutschland, which consists of experts from biotech research companies and law firms, advocates more interconnectedness between actors in the healthcare sector. In addition to revisions to data protection laws, the association also calls for a further development of the e-Health Law, which in BIO Deutschland’s opinion inadequately covers the integration of medical data.