European health data specialists discuss the ecosystem of the European health data space
The project forum convened European health data specialists to hear the latest TEHDAS results and key health data initiatives’ links to the future European health data space.
The fourth and final project forum of the TEHDAS joint action, held online on 15 December, brought together over 160 European health data specialists from 25 countries and representing a wide range of projects and initiatives. The focus was on the latest TEHDAS results and an exchange of insights with other European health data projects.
In parallel sessions, participants discussed multi-country data application requests and mutual recognition, experiences in sustainability plans, requirements for secure processing environments for analysing data, data minimisation and voluntary data sharing. This was followed by presentations from five key European projects, describing their role in the ecosystem of the future European health data space (EHDS).
Mutual recognition of data applications and sustainability plans
In the discussion on data applications for requesting data from several countries and mutual recognition, participants suggested learning from countries and projects that have experience in exchanging data. Mutual recognition means that a data permit issued by one health data access body in one country would be recognised by a health data access body in another country.
TEHDAS is currently drafting a sustainability plan for the EHDS, considering sustainability from a broad perspective. This includes, for instance, the capacity needed in each member state for the EHDS infrastructure as well as citizens’ trust in the EHDS initiative.
Requirements for secure processing environments
Secure processing environments (SPEs) are systems that allow highly sensitive data to be analysed and processed in a trusted and secure remote environment, facilitating the privacy-by-design approach. A key point that the participants raised was the importance of collaborating with other projects in developing the requirements for these environments.
Data minimisation means that only data that is relevant to research should be provided to applicants requesting data. Participants noted that the interpretation of minimisation varies and that there is a need for a common interpretation.
Voluntary data sharing
In the discussion on data altruism, the participants noted that this is already regulated in the Data Governance Act and that in the context of health data it will be further developed in the EHDS. Data altruism refers to people and organisations making health data voluntarily available for the public interest thereby enabling new data sources for secondary purposes such as research and innovation without seeking reward.
The participants highlighted the concern expressed by citizens and the health data expert community that more ways for voluntary data sharing are needed. The issue of how data donated through data altruism could be used by commercial entities was also discussed.
European projects interlinking with the EHDS
Many European health data initiatives share the ambition to ensure that researchers can access health data for the benefit of the population.
Mario Jendrossek from the HealthData@EU pilot project explained how the project will test European data sharing in practice. Juan Arenas from ELIXIR presented the Genomic Data Infrastructure’s aim to deploy the infrastructure required to make the genome information of one million Europeans safely accessible for joint European research.
“We truly believe that EHDS is a unique opportunity. There is an obligation to connect the infrastructures and maximise the benefits for all patients and citizens,” said Arenas.
Denise Umuhire presented DARWIN EU, an initiative by the European Medicines Agency, which aims to provide timely and reliable data on the safety and effectiveness of medicines. “DARWIN EU is a pathfinder: the knowledge gathered will be transferred to the EHDS,” she said.
Petronille Bogaert representing the Population Health Information Research Infrastructure described how the project has carried out four real-life use cases measuring the impact of Covid-19 on public health. Federated analysis was used in the project and infrastructure was created to support that.
Maria Panagiotopoulou from HealthyCloud presented the project’s latest recommendations that will enable health research to be distributed across Europe.
This was the fourth and final project forum of the TEHDAS joint action. “The aim of the project forums was to foster collaboration between different European projects, and we invite the participants to keep these collaborations going,” said Shona Cosgrove from Sciensano, the TEHDAS partner responsible for the forum.