The COVID-19 data donation project shows how.

Smartphones, smartwatches, and related apps are constantly improving their ability to record and store personal health data. The first proposal for an EU law on the European Health Data Space in 2022 would allow de-personalized health and wellness data to be shared without explicit consent in the future. There is understandably a backlash against this, and not just from data protection officers.

In an article published in npj digital medicineProfessor Stephen Gilbert from EKFZ for Digital Health and Professor Dirk Brockmann from the Center Synergy of Systems will discuss how health data from the public can be used for research in the future, while respecting individual rights.

Their proposed solution is based on the experience of data donation projects during the COVID-19 pandemic and represents a participatory, standardized, scalable, consent-based approach to data sharing.

More and more people are using wellness and health apps that measure, interpret, and store various parameters such as activity, metabolites, electrical signals, blood pressure, and oxygenation. This data is of great importance not only for personal interest but also for medical research. Analyzing such citizen-collected health data in combination with clinical data can help improve our understanding of the disease, its onset, and early diagnosis. It is also an important basis for research, especially the optimization of predictions based on deep learning and other artificial intelligence techniques.

Several data donation projects have been launched in Germany, the UK, and the US during the COVID-19 pandemic. These projects demonstrated active public participation and data sharing. The prerequisite was that they were able to decide for themselves what data to share and when, and that they were given the opportunity to withdraw their consent and stop participating at any time.

“It is ethically unacceptable to collect more personal data from the public by default every time a new smart product comes out, and it is especially ethically unacceptable to do so without first asking for consent. And it’s not politically sustainable,” said Gilbert, who co-authored the article. As a solution, researchers suggest the use of externally provided, trusted and secure consent platforms.

This allows users to understand with whom, where and for what purposes their health data is being shared. Active engagement further increases the likelihood that data will be shared over time. Researchers’ positive and useful experiences with voluntary data donations during the COVID-19 pandemic should be leveraged in the future to find long-term solutions.

“In the future, the use of personal health data for research will only work if all participants fully know and consent and can withdraw their decisions at any time. “It shows that they understand the benefits that can be brought to society through ‘their health and wellness data,'” says Brockmann, director of the Center for System Synergies at the Technical University of Dresden.