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TEHDAS consults stakeholders on data altruism

Individuals have a central role in sharing health data. Building citizens’ trust and control is a main prerequisite for data sharing.

A recent report by the joint action Towards the European Health Data Space (TEHDAS) presents a summary of stakeholders’ views on defining data altruism and best practices in involving citizens in data sharing for the upcoming European health data space.

Based on a series of workshops, the report concludes that individuals have a central role in sharing health data and actors in the data sharing process should aim at building trust with them and encourage their involvement in data sharing.

Data altruism refers to people and organisations making health data voluntarily available for the public good. As the Data Governance Act is a new law and introduces concepts such as data altruism and other types of data sharing by data intermediaries, we do not yet have the practical experience of how they work in the field of health.

Encouraging citizen involvement

The stakeholders agreed that people should be able to know where, how and to whom they can share or donate their data and what the advantages of doing so are. This could give people leeway in making and controlling decisions and the benefits they may get from data sharing.

The stakeholders felt that it is necessary to encourage people’s involvement in the data sharing process and to have methods and tools for sharing health data that are uncomplicated and user-friendly.

The stakeholders emphasised that the data sharing needs to be transparent and trustworthy and apply the principle of data being findable, accessible, interoperable and reusable (FAIR).

This report summarises the results of three online workshops organised in January 2022. Nearly 100 stakeholders participated.

The work is continuing and initial recommendations will be published in autumn 2022 and final conclusions will be delivered by May 2023.

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