Publics’ preferences for sharing health data: a discrete choice experiment (Preprint)

BACKGROUND The digital technological development in the last 20 years has led to a significant growth in collecting, using and sharing health data digitally. In order to maintain public trust in the digital society and for acceptable policy making in the future, it is important to investigate peoples’ preferences for sharing digital health data. OBJECTIVE The aim of this study was to elicit the publics’ preferences in different Northern-European countries (the UK, Norway, Iceland and Sweden) for sharing health information in different contexts. METHODS A discrete choice experiment was answered by 1,967 individuals. Respondents completed several ‘choice tasks’ which asked if data sharing in the described hypothetical situation was acceptable to them. Latent class logistic regression models were used to determine attribute level estimates and the heterogeneity in preferences. We calculated the relative importance of the attributes and the predicted acceptability for different contexts where data is shared from the estimates. RESULTS All attributes influenced the participants’ willingness to share health information. The most important attribute was whether the respondents will be informed about their data being shared. The possibility to opt-out from sharing data was preferred over the opportunity to consent (opt-in). CONCLUSIONS Participants from different countries have different preferences for sharing their health data regarding the value of a review process and the reason for the new use. Offering respondents information about the use of their data and the possibility to opt-out is the most preferred governance mechanism.