Using citizens’ data
securely in research:

Health apps are becoming increasingly popular

An increasing number of people are using wellness and health apps that measure, interpret and store a variety of parameters such as activity, metabolites, electrical signals, blood pressure and oxygenation. This data is not just for personal interest, it is also of great importance for medical research. The analysis of such citizen-gathered health data in conjunction with clinical data could help to improve understanding of diseases, their development and early diagnosis. It is also an important basis for research, especially for optimizing predictions based on deep learning and other artificial intelligence methods.

Learning from COVID-19 data donation projects

During the COVID-19 pandemic, several data donation projects were initiated in Germany, the UK and the US. These projects showed that citizens were willing to participate and share their data. The prerequisite was that they were able to decide for themselves when to share which data and were given the opportunity for consent withdrawal and to stop participation at any time.

The researchers propose the use of a trusted and secure externally provided consent platform. This would allow users to understand with whom, where and for what purpose they are sharing their health data. Active engagement further increases the likelihood that data will be shared over a longer period of time. Researchers’ positive and instructive experiences with voluntary data donation during the COVID-19 pandemic should now be used to find long-term solutions.

“In the future, the use of personal health data for research will only work if all participants are fully aware and consenting and can also withdraw their decision at any time. Our work has shown that citizens understand the benefits they can bring to society through volunteering their health and wellness data,” says Professor Dirk Brockmann, Director of the Center Synergy of Systems at TU Dresden.

The publication in npj Digital Medicine was created in collaboration between researchers from the EKFZ for Digital Health, the Center Synergy of Systems (both TU Dresden/Germany), the Robert Koch-Institut (RKI, Berlin/Germany) and the Scripps Research Institute (La Jolla/USA).