Transparency of personal health data sharing and the Digital Services Act

Personal health data boosts healthcare research, yet big corporations control much of it. This raises transparency and trust issues as customers have little or no information on how their data is collected, stored, and reused.

The Digital Services Act (DSA) aims to enhance digital service safety, accountability and transparency, particularly for large platforms. However, its application to digital health services requires further elaboration. Digital health services handle personal health data and require transparent practices to ensure privacy and trust. In this article, we explore how there are new opportunities to shine a light on these services and their use of personal health records via the transparency reporting of the DSA.

Concerns over digital health services include those related to giant tech companies dominating the health data market, the potential of data breaches and the inability to leverage these data at a societal level. A standardised transparency report would support interoperability and improve user trust. It must clarify key customer questions on data usage, collection, processing and sharing. Users should be able to identify the use of artificial intelligence (AI) and how AI decisions may impact them, understand secondary data use details, and decide on secondary data sharing.

In conclusion, standardising transparency reporting can become essential for digital health services under the DSA to combat data monopolies, ensure informed user consent and support innovation.