OBJECTIVES : The aim of this study was to elicit the publics’ preferences for sharing different kinds of health data digitally in different contexts.

METHODS : A discrete choice experiment (DCE) was answered by 500 individuals in four Northern European countries (UK, Iceland, Norway and Sweden) aimed at a total sample of 2000 (data collection is ongoing). Respondents were asked to accept or reject several hypothetical situations in which their health data would be shared. The DCE had five attributes: Collector of the data, New user of the data, Reason of using the data, Information about the sharing, and Review of data transfer. Swait-Louviere test for significant scale differences across the samples of the different countries. Panel mixed logit models were used to determine attribute level estimates and the heterogeneity in preferences. Based on these model outcomes, relative importance of the attributes were calculated.

RESULTS : All attribute significant influenced respondents willingness to share their health data digitally (p<0.05). Six percentage of the respondents rejected to share their data in all situations, while 20% accepted all situations. The most important attribute (more than twice) was whether the respondents will be informed about their data being shared; the possibility to opt-out was preferred over no information and a consent process. The least preferred attribute was whether the transfer of data will be reviewed or not, this might be related to the fact that the majority of the sample reported to trust the national authority (80%) and the legal system (79%).

CONCLUSIONS : Participants from the different countries have similar preferences for sharing their health data. Offering respondents information about what will happen with their data and offering them the possibility to opt out is the most preferred governance mechanism. Respondent were indifferent for putting in place review systems for data sharing.