Whose Health Record? A Comparison of Patient Rights under National Electronic Health Record (NEHR) Regulations in Europe and Asia-Pacific Jurisdictions

In this paper, we compare four patient rights regarding data stored in NEHRs under nine European and Asia-Pacific jurisdictions. We aim to ascertain whether the success and failure of NEHR implementations could be attributable to differences in patient rights. We note that while there is a convergence of access controls, there is a divergence with respect to controlling third-party access and modifying patient data. Analysing these divergences through four bioethical principles defined by Beauchamp and Childress, we find claims of patient empowerment mask a neoliberal perspective of outsourcing responsibility to patients. Likewise, refusing sufficient granular control can contribute to patient mistrust.We argue that it is important to conceptualise NEHRs as a public good and design regulatory frameworks accordingly.