Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries.
Roberta BiasiottoJennifer Viberg JohanssonMelaku Birhanu AlemuVirginia RomanoHeidi Beate BentzenJane KayeMirko AncillottiJohanna Maria Catharina BlomGauthier ChassangDara HallinanGudbjorg Andrea JonsdottirAníbal M AstobizaEmmanuelle Rial-SebbagDavid Rodríguez-AriasNisha ShahLea L SkovgaardCiara StauntonKatharina TschiggJorien VeldwijkDeborah MascalzoniPublished in: Journal of medical Internet research (2023)
This study showed the importance of transparency in data use and oversight of health-related data sharing for European respondents. Regional and intraregional preference heterogeneity for "data collector," "data user," "reason," "type of consent," and "review" calls for governance solutions that would grant data subjects the ability to control their digital health data being shared within different contexts. These results suggest that the use of data without consent will demand weighty and exceptional reasons. An interactive and dynamic informed consent model combined with oversight mechanisms may be a solution for policy initiatives aiming to harmonize health data use across Europe.