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Are we ensuring a citizen empowerment approach for health data sharing?

Data protection and privacy still entail further developments and high investment in order to positively impact trust and citizen reliability on digital services and tools.

Today, almost all (if not all) societal activities, especially in the health field, involve the collection and processing of large amounts of data. Technological advancement, with an emphasis on the exponential increase of eHealth apps, implies that the data collected in this field will quickly become very extensive, upto-date and timely. However, some major ethical and technical challenges arise when using big data to support health predictions, such as data protection and privacy, safe storage and analysis, scalability, potential security breaches and the capability to protect citizens rights, among others.

These concerns are already widely perceived by the European policy makers and are being addressed in communications, regulations and initiatives of several Member States, as well as EU projects, such as CA19121 – GoodBrother [1].

Being a fairly new area with many open questions, data sharing is a subject that is far from being discussed by the common citizen and a clear elicitation of its potential benefits will be key to active engagement. Besides an increase in trust, clear explanations on how and what data is collected, namely in video and audio-based applications, how can data sharing work in practice, what direct benefits can be achieved by the individual and by society and what are the low hanging fruits that can be collected are essential for the involvement of citizens in the data sharing Movement.

[1]  COST action 19121, Network on Privacy-Aware Audio- and Video-Based Applications for Active and Assisted Living. Accessed: March 18th, 2022. Available: https://goodbrother.eu/

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