The Impact of Trust and the Role of the Opt-Out Mechanism in Willingness to Share Health Data via Electronic Health Records in Germany: Telephone Survey Study.

Abstract

Background: Electronic health records (EHRs) offer a valuable resource for research and health care improvement. However, public acceptance of sharing personal health data is critical to the success of such initiatives. In Germany, automatic data sharing via EHRs will be implemented unless people opt out.

Objective: This study aims to assess the willingness of the German population to share health data via EHRs and to explore the role of trust in influencing these attitudes.

Methods: A computer-assisted telephone interview study was conducted in December 2023, with 1004 respondents aged 18 years and older, representative of the German population. Descriptive statistics and multivariate linear regression models were used to analyze the data.

Results: The survey shows that 43.4% (n=432) of respondents would be willing to share their health data via EHR, and a significant 34% (n=338) remain undecided. While the population is open to adoption of the EHR for personal health issues (n=483, 53% show interest in using it), the opt-out model for data sharing is viewed critically, with 44.7% (n=438) of respondents rejecting it. Socioeconomic status significantly influences the willingness to share data, with higher income, education, and digital literacy being associated with greater openness to data sharing. However, trust emerged as the most significant factor. Additionally, experiences with digital technologies increase the willingness to share personal health data.

Conclusions: The German population shows general openness toward EHRs and data sharing. Trust plays a critical role in promoting willingness to share health data. The findings highlight challenges in Germany's transition to an opt-out system.