High Willingness to Share Health Data

In the pandemic, many people have been prepared to make their health data available for research purposes. This is an important finding from a study on the behavior of the corona data-contribution app users. The study also provides information for future crisis technologies. The researchers from the Center for Computing Technologies (TZI) assessed users’ personal attitudes towards the corona data-contribution app from the Robert Koch Institute (RKI) and created recommendations for technology development based on this, which is to be implemented in future crises.

More than 500,000 people have downloaded the corona data donation app from the Robert Koch Institute to date. The app has the aim of identifying COVID-19 hotspots at an early stage and the willingness to share personal health data for it to be scientifically analyzed was found as being surprisingly high. The Human-Computer Interaction research group from the TZI, which is led by Professor Johannes Schöning, investigates users’ motivation by assessing more than 10,000 experience reports and carrying out comprehensive individual interviews with users.

In contrast to previous experiences with other projects in the field of health research, the app users also make their data available to research even if they see no direct benefit for themselves. Seemingly, the incentive of contributing to the fight against a big problem for society is enough. Whilst most of the users were aware of the app’s main goal - the early recognition of corona hotspots - they were not able to comprehend the personal value of their data contribution. The research team concludes from this that common good was the main motivation for the users.

Many of them were also not deterred by technological problems that did in fact have a negative effect on their experience. They waited for the errors to be fixed and supported each other. Furthermore, some of the users did not understand why it was not possible for them to add further personal data that they considered useful for the project.

Lessons for Future Scientific, Citizen-Participation Projects

The researchers highlight the importance of communication, transparency, and responsibility, for comparable future projects that are dependent on the data contributions of citizens for common good. “What has really proven itself to be important is, for example, the government’s and Robert Koch Institute’s support of the corona data-contribution app,” explains Johannes Schöning. It is recommended that official institutions actively support such projects with scientific, citizen contributions (citizen science) and clearly communicate the benefits for society.

In order to clarify the personal participation of all individual participants and to define their direct advantages, information should, however, also be communicated on an individual level, for example by regular app notifications. The creation of a community that supports each other when they have questions is also advised, according to the TZI researchers. Available health apps should be used and crisis-specific technologies should be added to them in order to avoid technical problems and accelerate development. This is why, for example, the corona data contribution app is already connected to various fitness apps.

“We believe that our results could be transferred to projects that are carried out under comparable conditions,” says Schöning, “for example when governmental institutes need to fight widespread health risks.”

The study was funded by the Lichtenberg Professorship from the Volkswagen Foundation, the BMWi network KI-SIGS, the BMBF project InviDas, and the Leibniz ScienceCampus Digital Public Health Bremen.

Wissenschaftlicher Ansprechpartner:
Prof. Dr. Johannes Schöning
Center for Computing Technologies (TZI)
University of Bremen
Phone: +49 421 218-63591
Email: schoening@uni-bremen.de

Originalpublikation:
https://arxiv.org/abs/2101.04913

Weitere Informationen:
https://hci.uni-bremen.de/ Human-Computer Interaction research group at the TZI