Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey.
Giovanna Nunes VilazaDavid CoyleJakob Eyvind BardramPublished in: Journal of medical Internet research (2021)
This study reveals essential factors for acceptance and willingness to share personal data with digital health research repositories. Implications include the importance of being more transparent about the goals and beneficiaries of research projects using and re-using data from repositories, providing participants with greater autonomy for choosing who gets access to which parts of their data, and raising public awareness of the benefits of data sharing for research. In addition, future developments should engage with and reduce risks for those unwilling to participate.