What motivates people to donate their health data to research?

75 per cent of German smartphone users have installed freely available health and fitness apps (Bitkom survey 2020). They are primarily intended to help improve their health, but the data they generate is also of particular value for research. As longitudinal data, it can provide clues for the development of better and new medicines, the faster diagnosis of rare diseases or the treatment of chronic illnesses.

However, this data must be provided voluntarily by users for research purposes. This option does not exist in many applications; so-called data donation apps have to be installed and interfaces set up - not very user-friendly. "We therefore asked ourselves the question: Is there an attractive equivalent value other than money that could persuade people who track their health-related data themselves to donate it for research?" says Dr Katharina Pilgrim, summarising the question posed by the research project, which was carried out as part of the ATLAS project at Witten/Herdecke University.

Voluntary data donation for research - an experiment

"We conducted a digital experiment and asked 1,000 German health self-trackers whether they would donate their data for research. Some of the respondents were offered the prospect of receiving something in return for the donation and some were not," explains co-author and ATLAS project manager Prof Sabine Bohnet-Joschko. The researchers used motives known from previous studies on health self-trackers: These had primarily identified selfish reasons, such as building up expertise on one's own body or about an illness. The first egoistic consideration was therefore the prospect of specialised information for further knowledge generation. It is also known that people share their data in order to be recognised or to be assigned to a group. These two counter-values were also offered in the experiment in return for donating the tracked data.

Surprisingly, however, these familiar motives for health self-trackers had no influence on the willingness to donate data for research, which averaged 41 per cent. In contrast, the prospect of making a contribution to the community significantly increased the willingness to donate among men by almost 16 per cent. Women, however, remained unimpressed by this motivator; in this study, they also showed reluctance to share sensitive personal information.

The researchers draw the following conclusion from their study: prosocial motives promote the willingness to donate digital health data among health self-trackers and should be taken into account when designing campaigns in order to increase the chance of gaining access to personal health-related data for research.

The study has now been published in the Journal of Medical Internet Research (IF 5.43) and is available free of charge at https://www.jmir.org/2022/2/e31363.