How to ensure efficient and secure use of health data beyond borders? France and Finland collaborating to find answers

The first two national centralized health data platforms in Europe, the French Health Data Hub and Finnish Findata, have announced a two-year collaboration through a memorandum of understanding. Providing unified access to health data to researchers and other key stakeholders, they stand as models for other countries to follow.

“Findata and the HDH were created with the same objective: building national single gateways for health data access requests, and thus fostering health data related research. Our partnership results from our commitment to animate the European health data ecosystem and contribute to the construction of a common European Health Data Space” says Stéphanie Combes, director of the French Health Data Hub.

Both countries have recently gone through major systemic changes in the field of health data much like the whole of Europe since GDPR came into effect. Both Findata and the HDH have been implemented in this context.

The mutual goal of the now signed agreement is to facilitate the effective and safe secondary use of health data, by respecting citizens’ rights and following FAIR principles (Findable, Accessible, Interoperable and Reusable). Such collaboration between health data access platforms offers a unique opportunity to promote practical know-how and learn from each other’s best practices.

“We have a long history of using health care data for secondary purposes in Finland. As digital data space is developing, it is important to ensure safe and secure access to this data so that it can be shared and treated with respect. Only in this way will we be able to nurture the trust of the people – on which all this is based”, says Johanna Seppänen, director of Findata.

The focus of the work planned within this agreement is on sharing best practices as well as identifying challenges and finding solutions to support cross-data sharing feasible in Europe.

A pioneering cross border collaboration divided into four axes

Groundwork for memorandum of understanding was prepared as a part of TEHDAS, the European joint action Towards the European Health Data Space. Led by Sitra, the Finnish Innovation Fund and think tank, TEHDAS aims to develop concepts for the secondary use of health data in Europe and involves 25 European countries.

In order to address the shared challenges as national health data platforms, Findata and the Health Data Hub constructed a memorandum of understanding around four main concrete axes of collaboration. While working on the document, the Health Data Hub was able to receive valuable help from its Affiliated Entity, the CERPOP Research Unit (Inserm/Université-Toulouse III), whose great expertise was mobilized in the drafting of this agreement.

The first one focuses on the development of metadata catalogues. The second tackles challenges and good practices in data access and management. It entails the exploration of a possible future collaboration around synthetic data. The third axis of collaboration will revolve around international collaboration and fourth in international communication for example to promote activities conducted by Findata and the HDH.