Trust, Beliefs, and Bias: Understanding Preferences for Consent Procedures for Secondary Use of Health Data

Secondary use of routine health data requires regulatory frameworks and consent procedures as a legal basis for data protection. The different consent models, however, influence representativeness, and thus quality, of the data. This study examines how socioeconomic factors, beliefs, and attitudes shape citizens' preferences for consent procedures, providing insight into potential biases in healthcare databases and the characteristics of patients who choose not to share their data. Using questionnaire data from 3,709 Dutch respondents, descriptive and forward selection regression analyses were conducted. Results show that predictors related to societal trust significantly influence preference for an opt-in procedure, while respondents with no preference for a consent procedure show similar patterns to those who are uncertain regarding their preference, involving trust, media, and politics. These findings are relevant to the proposed opt-out system within the European Health Data Space (EHDS), which may not align with citizens' preferences and may require active communication to gain public trust.