The Imperative of International Cooperation in Health-Related Data Spaces: A Case for Collaboration between Europe and Japan

Background information around data sharing in Japan and Europe

In the early 2020s, an international industrial, academic, and  political community in Europe began to build a common standard for  transparent, controllable, and interoperable technologies that would  enable the creation of common data spaces, and in doing so boost the  European data economy. While this was initially believed to be the  prelude to building a “European cloud” as an alternative to the  dominance of the hyperscalers, it soon became obvious that the real  focus and value was somewhere else. The real goal was to foster  regulation and technical solutions around storing and exchanging data in  a European context, instead of accepting unregulated transfer of data  enabled by public cloud providers.

Several European initiatives like the Gaia-X European Association for  Data and Cloud AISBL aligned closely to the European Commission and  flourished from these initial ideas. Today the strategic plan of Gaia-X  demonstrates a foundation to work with cloud service providers,  including hyperscalers, while maintaining sovereignty through Gaia-X  rules. The creation of common federated data spaces and the controlled  data exchange between them became the ways in which European countries  together and countries outside Europe collaborated with each other.

Japan began to undertake similar initiatives and looked at similar  issues, building its own foundation on domestic data linkage in the  early 2020s, with an aim to develop international data sharing. DATA-EX  was founded to focus on these topics and to promote the idea to major  overseas organizations. At its core is the goal to overcome the  challenge that data cannot be distributed beyond the barriers of local  and global companies and industries. The idea of "DATA-EX" is a  federated platform aimed at data linkage beyond the federal field. It  continuously keeps data within a source for each vertical, while  exchanging and utilizing only the necessary data when needed.[1] The  Data Society Alliance (DSA) promotes data distribution and utilization  across verticals through the collaboration between industry, government  and research.[2] The DSA is the body behind "DATA-EX," a platform that  aims to link data between verticals and promote the connection with  other international data frameworks such as Gaia-X. The agency further  promotes the "data society" in Japan, which is described in 10 strategic  goals. These goals define the activities necessary for the healthy  growth of the data society.

Luxembourg as a leading country for healthcare in the Gaia-X community

Gaia-X defined the role of Gaia-X Hubs as a crucial component of  the Association. The Hubs support the investigation, design, and  implementation of data spaces offering Gaia-X-compliant services. Hubs  are tightly connected to local governments through the ministry devoted  to digital transformation programs. They work in line with the strategic  political initiatives and align with the Gaia-X projects of the  Association and of all other European hubs. Japan was the first country  outside Europe to invest in a local Gaia-X Hub and linked its activity  to the Data Society Alliance.[3] Within Gaia-X, some countries took the  lead on different verticals. Germany was focused on the automotive  sector very early and France got the lead in finance. Many countries  prioritised the health domain; Luxembourg focused very heavily on  healthcare, which was underlined by the international role of the  Luxembourg Institute of Health (LIH) in research.

During 2023, a consortium of partners from the healthcare sector in  Luxembourg and NTT DATA teamed up in a strategic healthcare data  exchange project. At the end of 2023, Luxembourg announced the launch of  an innovative new platform called DataSpace4Health (DS4H). This  platform plans to bring many benefits, including improved diagnosis and  treatments, better understanding of diseases, and effective preventive  measures. DS4H has the ambition to be a strong European Gaia-X  lighthouse candidate in the healthcare vertical. As a lighthouse project  like Catena-X, DataSpace4Health has the ambition to establish its own  brand and is welcoming new partners over the coming months. The project  aims to create a platform to implement multiple health data spaces in  Luxembourg with a consistent and interoperable design. It will provide  the foundation to address missing regulation requirements for secure  data Exchange, monetization of health data and new medical  treatment possibilities leveraging data and AI. The outcome will be a  use case-driven data space platform that allows easy deployment of new  healthcare use cases in Luxembourg. The platform is planned to be  validated in the first two use cases in the areas of diabetes and  oncology. Finally, as an upcoming Luxembourgish lighthouse project, it  aims to provide the foundation for data space developments in other  vertical sectors.

Introduction to health-related data spaces

In the rapidly evolving landscape of healthcare, the integration  of digital technologies and data-driven solutions has become paramount.  Health-related data spaces, which encompass vast repositories of health  information, are instrumental in advancing medical research,  personalized healthcare, and disease prevention. However, the effective  utilization of such data requires a global approach, and international  cooperation is crucial for addressing the challenges and harnessing the  opportunities presented by these data spaces. This article explores the  necessity of collaboration in health-related data spaces, focusing on  the similarities in data protection laws between Europe and Japan and  highlighting the potential benefits of a robust partnership between the  two regions.

The significance of health-related data spaces

Health-related data spaces refer to interconnected sources that  store diverse health information, ranging from electronic health records  and genomic data to real-time monitoring information of patients. These  spaces serve as invaluable resources for researchers, healthcare  professionals, and policymakers, offering insights into disease  patterns, treatment effectiveness, and the development of new therapies.  The potential of these data spaces is vast, promising advancements in  precision medicine, predictive analytics, and the overall improvement of  global healthcare systems.

The need for international cooperation

There seems to be a relationship between Standardization of data accumulation and utilization practices, "Data accessibility and sharing" and "Research collaboration and innovation." The  later one could be considered as one of the goals. To realize such a  goal, we should accelerate "Data accessibility and sharing" by reducing  costs and extra efforts. That reduction is empowered by the  standardization.

Data accessibility and sharing: health-related data spaces often involve  data collected from a multitude of sources across different  jurisdictions. Collaborative efforts can streamline the process of data  sharing, ensuring that researchers and healthcare professionals can  access a more comprehensive and diverse dataset. This is particularly  critical for rare diseases and conditions that may have limited data  available in individual regions.

Research collaboration and innovation: international cooperation  encourages collaborative research initiatives, fostering innovation in  healthcare. By pooling resources and expertise, countries can  collectively tackle global health challenges, leading to the development  of novel treatments, preventive strategies, and medical technologies.

Standardization of Data Accumulation and Utilization Practices:  establishing common standards for data collection, storage, and sharing  is essential for the interoperability of health-related data spaces.  International collaboration can facilitate the creation of universally  accepted guidelines, ensuring that data is handled ethically, securely,  and in compliance with privacy regulations.

Europe and Japan: a confluence of data protection laws

Europe and Japan stand out as key players in the global landscape  of data protection, with both regions adopting stringent measures to  safeguard citizens’ privacy. The European Union's General Data  Protection Regulation (GDPR) and Japan's Act on the Protection of  Personal Information (APPI) share common principles, including the need  for explicit consent. On the other hand, there are no laws and  regulations in Japan exactly corresponding to the data minimization and  the right to be forgotten in Europe. It is important to understand both  the similarities and differences between regions, to consider the way to  overcome the gap and respect the motivations of both sides’ laws and to  finally establish a solid foundation for collaboration in  health-related data spaces.

Benefits of cooperation between Europe and Japan

Legal compatibility: Both regions aim to promote the use of data  under the appropriate management. There is a partial similarity in the  data protection concept between Europe and Japan, however there are also  differences in approaches. By overcoming the differences and leveraging  common motivations, we can create a conducive environment for seamless  data sharing. Researchers and organizations in both regions can  collaborate with confidence, knowing that data governance practices  align closely, reducing legal and regulatory barriers. Whereas the data  protection regimes are not fully identical, it is worthwhile to further  explore and overcome the areas of discrepancies.

Cross-cultural insights: collaboration between Europe and Japan offers  the opportunity to analyze health-related data from diverse populations,  contributing to a more comprehensive understanding of genetic,  environmental, and lifestyle factors that influence health outcomes.  This cross-cultural perspective can lead to more effective and  personalized healthcare solutions. Whereas the variations across  populations may not always be relevant, it is worthwhile to investigate  where patterns are similar and where they vary significantly, for  example by mirroring the exact same data statistics in both regions as a  standard practice.

Ethical data use and trust building: the alignment in data protection  laws enhances the ethical use of health data, promoting trust among  stakeholders. Transparent and responsible Data Accumulation and  Utilization Practices build a foundation of confidence, essential for  sustained collaboration in the dynamic field of health-related data  spaces. It is worthwhile to further explore the similarities and  differences in the criteria employed by medical-ethical committees.

Conclusion

In the era of digitized healthcare, the collaboration between  Europe and Japan in health-related data spaces is not only logical, but  also strategically advantageous. The convergence of data protection laws  lays the groundwork for a secure and ethical exchange of health  information, enabling breakthroughs in medical research, personalized  healthcare, and disease prevention. As we navigate the complexities of a  data-driven future, international cooperation becomes an imperative,  with Europe and Japan poised to lead the way in shaping the global  landscape of health-related data spaces.

An outlook on the near future

Concluding the strategical impact of a collaboration between Japan  and Europe on health-related data spaces and the leading European  ambition of Luxembourg in that domain, it is interesting to analyze the  potential next steps to a fruitful collaboration. The DSA in Japan and  the coordinators of the Gaia-X Hubs in Japan and Luxembourg began to  evaluate a potential closer collaboration on data spaces in late 2023.  Universities in Japan and Luxembourg are closely involved in national  and international data sharing projects on both sides. NTT DATA Group  (HQ) and NTT DATA Luxembourg work together closely with both  universities in those data-sharing projects. As earlier described, one  of the most successful projects when it comes to regulated international  data exchange is Catena-X, which has a focus on supply chain management  in the automotive industry between Europe and Asia.

After the launch of Catena-X, the first Gaia-X compliant data space, in  October 2023, it became obvious that an international interoperability  of data spaces was required. For realizing international  interoperability, we are now starting discussions about how we can  mutually connect Trust Anchors, Trust Services such as Gaia-X Digital  Clearing House in Europe, and Dataspaces Core Services internationally.  That topic was recently further discussed in the International Open  Forum on Data Society in Paris[4] and in the Data Spaces Symposium in  Darmstadt[5]. We believe that the international interoperability of  trusted data spaces is essential to share and utilize information across  the global value chain for solving international social issues such as  carbon neutrality, resource circulation and protecting human rights.

To recognize the value of data spaces from the outside, the entry  point/touch point for society is important. The University of Tokyo has  signed MoUs with DSA and IDSA, and maintains a close collaboration with  Gaia-X and Catena-X. In this context, the University of Tokyo is  actively engaged in establishing a dataspace for global data  distribution. When constructing such a dataspace, it is crucial to  ensure interoperability while integrating diverse technologies and  systems. To this end, the University is developing and offering a  dataspace testbed to align these endeavors with the initiatives of  Luxembourg, which shares similar aspirations. These kinds of  collaboration accelerate data sharing ecosystems. The next step is to  connect other testbeds with the activities, not only in Japan but also  in other countries. Furthermore, there are many different data platforms  for each industry. This is why society potentially requires  "federation" to utilize the true benefits of scale. Society has many  issues and challenges, such as those of sustainability and population  decline, and federal data utilization contributes to tackle them.

An international testbed setup between Japan and Europe was already at  the core of the Gaia-X community, including concrete data spaces such as  Catena-X. NTT DATA Group (HQ), in collaboration with the DSA and the  University of Tokyo, was the main actor in building the testbed. In the  meantime, a data space testbed has been implemented, also in Luxembourg.  The three partners to build the testbed have been Luxembourg National  Data Service (LNDS), Luxembourg Institute of Science and Technology  (LIST) and NTT DATA Luxembourg. It is designed to be extended to support  cross-country test cases.

Developing data spaces for the healthcare domain is becoming  increasingly important. It is easy to understand that we need to protect  the data sovereignty of data providers to promote data sharing and data  utilization across multiple organizations such as hospitals,  governments, and healthcare-related companies. Luxembourg is recognised  in Japan as a leading player in developing nation-scale healthcare data  spaces, which protect cybersecurity and data sovereignty. For that  reason, NTT R&D plans to contribute activities in Luxembourg by  applying solutions such as privacy-enhancing technologies, which can be  used to protect data sovereignty (IOWN PETs[6]). NTT R&D proposed to  collaborate via NTT DATA in Luxembourg to solve international social  issues by teaming up with NTT DATA in Luxembourg, Gaia-X Hub Luxembourg,  and DS4H.

Europe is working towards the creation of European health data space  regulation, which will create a hub-and-nodes infrastructure between all  European member states. This infrastructure will simplify the access to  data from multiple European countries. Luxembourg is a strong  contributor to these concepts, for example its pioneering work within  the Genomic Data Infrastructure project consortium. When we enable a  strong data exchange capability between Luxembourg and Japan, Luxembourg  could act as a bridgehead for Japanese researchers into this  European-wide data sharing infrastructure.

The clear ambition is to replicate the best success results of  progressive European and Japanese activities, frameworks, associations,  institutions and projects for the cause of international  interoperability, such as Gaia-X, IDSA, Catena-X, DSA, and the  University of Tokyo. During a state visit to Japan in January 2024,  Luxembourg Foreign Minister Xavier Bettel stated that he would like to  deepen cooperation with Japan. The World Expo in Osaka 2025, in which  Luxembourg will take part, was also on the agenda for the discussions.  Furthermore, in June this year, there will be a trade mission organized  by the Luxembourgish Chamber of Commerce, where a larger delegation from  Luxembourg will visit Japan, in the context of Osaka 2025. Key  stakeholders from the healthcare sector and from the government in  Luxembourg have begun to organize an agenda and will be able to go  deeper into the discussions that are currently ongoing. The  collaboration between Japan and Europe on health-related data spaces is  one of the points on that list. The potential integration of testbeds  between Japan and Luxembourg, focusing on secure and ethical exchange of  health information, enabling breakthroughs in medical research,  personalized healthcare, and disease prevention, is within reach.

[1] https://en.data-society-alliance.org/data-ex/

[2] https://en.data-society-alliance.org/about/

[3] https://data-society-alliance.org/wp-content/uploads/2022/04/Press_Release_Gaia-X_DSA_ver2.pdf

[4] https://www.dawex.com/en/dsa-paris-event-feb-2024

[5] https://www.data-spaces-symposium.eu/

[6] https://www.rd.ntt/e/sil/project/iown-pets/iown-pets.html