If you add up all the players in the healthcare and technology ecosystem--each with their own expertise and data--they are numerous, which makes it that much harder to imagine that basically all of them have come to the table in the name of data security and digitally enhanced care.
The name of the project is Dataspace4Health. Its aim is to interconnect different systems in the healthcare sector to define a reliable model for sharing health data in the best possible way while “respecting security and confidentiality obligations.” The collaborators are digital infrastructure operator NTT Data, Robert Schuman Hospitals, the Luxembourg Institute of Health (LIH), the University of Luxembourg, the eSanté Agency and the Luxembourg National Data Service (LNDS).
The ultimate vision is build a data infrastructure that will serve patients while meeting other challenges, including commercial, legal and technical ones.
For the time being, Dataspace4Health is a research project, not a live application or data exchange platform.
Is the data really secure?
This is an obvious first question, in particular given the project’s ties to tech giants whose history with data privacy isn’t completely clean. Specifically, the NTT is a partner with Microsoft, Amazon Web Services (AWS), Google and Alphabet. In France, the “Health Data Hub” uses the EU-based Microsoft Ireland to host health data in centres that are physically in France, though the country’s Commission Nationale de l’Informatique et des Libertés (CNIL) (French only) that the parent company of this host is based in the United States.
Asked about this issue, the NTT says: “This is a research project that aims to assess how the healthcare sector in Luxembourg would benefit from the data economy defined by the European Commission, and not from a data platform. Security within the new model is key for us. The project adheres to and is part of the European data strategy. It will be fully compliant with the GDPR rules and takes into account the recent publications of the European Commission (Data Governance Act, Data Act, Interoperable Europe Act, AI Act, etc.) The European Commission is defining new operational data models based on a new concept called ‘data space.’ The project is an experiment in these new concepts and is fully aligned with the regulations and rules at the European and national levels.”
Asked about data sharing, the NTT says: “We do not use or share actual patient data with external parties. As part of this project, we will evaluate and create a new operational model between the hospital and research institutions.”
The ambition is not limited to Luxembourg, as the project also aims to adhere to the standards set by Gaia-X, a European digital governance initiative designed to achieve data transparency, controllability, portability and interoperability. “Health is perhaps the hardest challenge to address on the European scene,” said Ralf Hustadt, Luxembourg’s national Gaia-X coordinator, in a statement released on the LIH website. “It involves working together with different stakeholders and meeting high standards for security and compliance. That’s why I’m very pleased that the consortium members of Dataspace4Health joined forces and approached this issue.”
Gaia-X was launched in response to the observation that data exchange was still limited by proprietary technologies that lacked transparency and did not allow for interoperability. “The Dataspace4Health project represents a pivotal moment for healthcare in Luxembourg,” commented , director general of Robert Schuman Hospitals, in the same statement. “We see this initiative as a crucial step towards realising our vision of a digitally transformed healthcare system.”
The promoters of the initiative are confident that it will lead to concrete benefits for patients. Ultimately, the initiative should make it possible to explore new medical treatments based, for example, on data and artificial intelligence. “The built ecosystem is use-case driven,” says the NTT in a press release from 1 April, “and has been validated through initial use cases in diabetes and oncology, paving the way for future applications in other healthcare sectors.”
What it could mean for patients
Diabetes affects half a billion people worldwide, but not uniformly: it causes different types of impairment and therefore requires personalised care. In this case, the use of data and AI could make it possible to prevent a number of complications. On the basis of the data, doctors could envisage certain specific treatments and abandon others, taking into account the case of each patient. A wealth of data could also make it possible to test the effectiveness of certain treatments via a “digital twin.”
Like diabetes, cancer could also be better managed thanks to data, namely by helping choose the best treatment and anticipate undesirable effects. A platform like Dataspace4Health could make it possible to establish closer links between the healthcare teams that draw up patient care protocols and the researchers working on new treatments. Precision programmes could then be put in place.
“Our role is to drive the AI component of this project, developing new algorithms for medical research, thus opening new frontiers in healthcare innovation,” says , director of the Interdisciplinary Centre for Security, Reliability and Trust (SNT) at the University of Luxembourg, in the LIH statement.
This article in Paperjam. It has been translated and edited for Delano.