[Knowledge and attitudes towards sharing of health data: Results of a population survey]

The article tackles various issues arising in the context of the process of digitalization in the health sector. The communication and availability of health data, health registers, the electronic health record, consent procedures for the transfer of data and access to health data for research are considered.

The study is based on a computer-assisted telephone survey (dual-frame) of a random sample of adult people living in Germany. Data was collected in the period between June 01 and June 27, 2022 (n = 1,308).

The level of knowledge concerning the transmission of health data to health insurers is good, whereas the existence of central death-, vaccination- and health registers as well as the access to health data by treating physicians is overestimated. The general acceptance of medical registers is very high. Half the population is unfamiliar with the electronic health record, and the willingness to use it is rather low. An opt-in procedure is preferred when transferring data, and more than eighty percent would release data in their electronic health file for research purposes. Three quarters would consent that their health data be handed over to general research, especially if reserach facilities were situated at German universities, under the condition that their data be treated confidentiallly. The willingness to release data correlates with the level of trust in the press as well as in universities and colleges and decreases when a data leak is considered to be serious.

In Germany, as in other European countries, we observe a great willingness of people to release health data for research purposes. However, the propensity to use the electronic health file is comparatively low, as is the acceptance of an opt-out procedure, which in the literature is considered a prerequisite for the successful implementation of electronic health records in other countries. Unsurprisingly, a general trust in research and government agencies that process health data is a key factor.