Normally, we define ourselves by the groups we identify with. “People-like-us” are more trustworthy than the “out-group”. This easily leads into “Not-invented-here syndrome” (NIH) that can be defined by a tendency for people and organizations to avoid things that they did not create themselves. This demonstrates in siloed ICT projects and initiatives that seem to be too specific to be understood by “outsiders”. However, building on existing work and findings is a necessity for European companies to keep up to pace with global competition for data-driven innovations, at least when it comes to building supporting structures and infrastructure for research & innovations.
No one is big enough alone to master the complex future. Curious minds could help here in learning from others and building on accomplished work. It seems that even politicians and decision makers are sharing the same mindset: bringing in more cohesion and bridging different aspirations together is the efficient way forward. Ecosystems and collaboration are the keys for sustainable future despite of the differences.
The European strategy for data has two main aspirations: building a cross-sectoral governance framework for data access and use and establishing common European data spaces in strategic sectors and domains of public interest. The governance framework is supported by new regulative acts, such as the Data Governance Act: introducing new approaches to standardization, data intermediaries and data altruism.
The European strategy for data needs to be put in practice and funding is provided mainly through two programs: Horizon Europe and Digital Europe. During the recent Horizon Europe info-days (Info Day about Horizon Europe 2021-2022 calls, https://www.bdva.eu/node/1813) for stakeholders for EU research and innovation, the European Commission emphasized the importance of the common impact of these calls and the importance of relating with other initiatives already established.
The creation of a European Data Space is one of the priorities of the Commission 2019-2025, including the health sector. The work on a European Health Data Space has started more than a decade ago and was focused on the cross-border exchange of clinically relevant data (patient summary and ePrescription). The ambition is now much higher: a common European Health Data Space should promote better exchange and access to different types of health data, not only to support healthcare delivery, but also for health research and health policy making purposes. The unique specificities of health data compared to data in many other sectors require specific EU legislation.
TEHDAS, the joint action Towards the European Health Data Space (TEHDAS project, https://tehdas.eu/project/) lays a foundation for the emerging European Health Data Space by developing joint principles for the secondary use of health data in Europe. TEHDAS aims to build good practices for a FAIR operational framework and governance models for the secondary use of health data, provide guidance in data quality and provide options for the technical interoperability elements of the EHDS, according to the European Interoperability Framework. Just recently, a TEHDAS analysis on exploring why governing of health data needs dedicated EU regulation was published (TEHDAS https://tehdas.eu/news/tehdas-analysis-health-data-needs-dedicated-eu-regulation/).
Although health data requires dedicated data governance rules that cannot be governed only by horizontal legislation, we should be able to look at other levels of interoperability and find the common ground for solving the challenges for semantic and technical interoperability of health data. Gaia-X (Gaia-X: a federated data infrastructure for Europe: http://gaia-x.eu/) creates the foundation for a sovereign, federated, open data infrastructure based on European values. Gaia-X Health domain working group has drafted a first position paper for a Health Data Space using the Gaia-X framework and aligned with the European Health Data Space initiative. Gaia-X focuses on standards and technical frameworks, not specifically on organizational and legal challenges for interoperability. The soon-to-be-published position paper calls stakeholders to contribute to further discussion to adopt the learning from existing data initiatives and with funding partners to support the implementation of these ambitious plans.
We have been working with initiatives like Gaia-X, TEHDAS and IHAN® project, Sitra’s Fair Data Economy initiative (https://www.sitra.fi/en/articles/turning-europe-into-a-fair-data-economy-trailblazer-lessons-learned-in-the-ihan-project-show-the-way/). Recently we met with EHDEN team and were impressed by its ambition and its work-in-progress. To an outsider it seems that these initiatives are working exactly towards the same goals. But with a curious mind, looking behind the website, understanding the focus and the maturity of each initiative there are differences, e.g., where EHDEN is in deployment, Gaia-X is still in concept phase; EHDEN is very focused on federated data sources using a common data model whereas Gaia-X is very broad and cross-industry using an architecture of standards; the EHDEN technical framework enables decentral data processing, Gaia-X supports both central and decentral approaches; etc. However, avoiding the NIH syndrome and in dialogue with people we trust that we can find new areas for collaboration to avoid duplicative work and to build more scalable and more sustainable solutions.
Connecting and engaging with European projects should be a priority for all, but good mindset and curious mind do not help alone, there needs to be funding for collaboration. The joint mission for all initiatives is to provide access and to share health related data securely and confidently for the benefit of our European patients, citizens, residents, and societies. In future dialogues we want to discuss how to fund and to realize the synergies between the projects realized. And we wish to show that the NIH syndrome will not prohibit the well-being of the European societies.
The authors are active in the European health domain working group for Gaia-X:
- Jaana Sinipuro, Project Director at the Finnish Innovation Fund Sitra, an active fund for the future who studies, researches, and brings together partners from different sectors in open-minded trials and reforms. Their future-oriented work is aimed at making Finland succeed as a pioneer of sustainable well-being.
- Bert Verdonck, Program Manager Health Data Initiatives at Royal Philips, a leading health technology company focused on improving people's health and well-being and enabling better outcomes across the health continuum – from healthy living and prevention, to diagnosis, treatment, and home care.