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Romain Cadario, Carmel Shachar, Glenn Cohen et al., ‪What Rights do and should Stakeholders Have for Medical Data? A Survey of Patients, Physicians, and Hospital Administrators‬‬, medRxiv (2023).

Abstract: We examine perceived and idea ownership of US patient medical data as governed by HIPPA in a survey of three stakeholder groups: patients, primary care physicians, and medical administrators. Current and ideal unbundled ownership were measured with six questions about the rights to access, control access, profit, modify, destroy and transfer rights. First, we find that there is an underestimation of the patients’ rights in their medical data across all three samples of stakeholders. Second, all stakeholders agree on expanding patients’ rights and curtailing rights afforded to health systems.