Accepted for/Published in: JMIR Human Factors
Date Submitted: Aug 23, 2024
Date Accepted: Mar 4, 2025
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Willingness to Share Health Data via Electronic Health Records in Germany: The Impact of Trust and the Role of the Opt-Out Mechanism
ABSTRACT
Background:
Electronic health records offer a valuable resource for research and healthcare improvement. However, public acceptance, regarding the sharing of personal health data, is crucial for the success of such initiatives. In Germany, data sharing will be automatic unless people opt out. There is scarce evidence about the willingness to share health data and the opt-out solution propagated by the government.
Objective:
This study aims to assess the willingness of the German population to share health data via electronic health records, identify socio-economic disparities in this willingness, and explore the role of trust in influencing these attitudes.
Methods:
A telephone survey (CATI) was conducted in December 2023, with 1,004 respondents aged 18 and above, representative of the German population. The survey explored digital literacy, willingness to share health data, and attitudes toward the EHR and opt-out mechanisms. Descriptive statistics and multivariate linear regression models were used to analyze the data.
Results:
The survey revealed that 43% of respondents are willing to share their health data via electronic health record, while 23% oppose it, and a significant 34% remain undecided. While the population is open to an adoption of the electronic health record for personal health issues (53% intend to use it), the opt-out model for data sharing is viewed critically, with 45% 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, overshadowing socio-economic variables. Trust in science increased willingness to share data by over two points on a 5-point scale (p<.001). Additionally, experiences with digital technologies increase the willingness to share personal health data.
Conclusions:
The German population shows general openness towards electronic health records and data sharing, yet a significant portion remains skeptical or undecided. 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
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