Whose Health Record? A Comparison of Patient Rights under National Electronic Health Record (NEHR) Regulations in Europe and Asia-Pacific Jurisdictions
![handle is hein.journals/sjls2021 and id is 57 raw text is: Singapore Journal of Legal Studies
[2021] 56-75
WHOSE HEALTH RECORD? A COMPARISON OF PATIENT
RIGHTS UNDER NATIONAL ELECTRONIC HEALTH
RECORD (NEHR) REGULATIONS IN EUROPE
AND ASIA-PACIFIC JURISDICTIONS
JAMES SCHEIBNER,* MARCELLO IENCA** and EFFY VAYENA***
In this paper, we compare four patient rights regarding data stored in NEHRs under nine Euro-
pean 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.
I. INTRODUCTION
Electronic health records (EHRs) are no longer just a mechanism for conveniently
storing patient data. Governments, healthcare providers and researchers all hunger
for more data to help solve the wicked problems posed by healthcare. These include
ageing populations, chronic illness and fragmented healthcare delivery.1 Advocates
for reform argue that electronically storing and making patient EHRs available can
help fix the wicked problems of healthcare management.2 It is therefore tempting to
Lecturer, College of Business, Government and Law, Flinders University, Australia. Postdoctoral
Research Fellow, Health Ethics and Policy Laboratory, Department of Health Sciences and Technology,
ETH Zurich, Switzerland.
Senior Research Fellow, Health Ethics and Policy Laboratory, Department of Health Sciences and
Technology, ETH Zurich.
Chair of Bioethics, Health Ethics and Policy Laboratory, Department of Health Sciences and Technology,
ETH Zurich, email: <effy.vayena@hest.ethz.ch>. The authors would like to thank Agata Ferretti for her
helpful suggestions and comments on drafts of this manuscript.
Sara E Shaw & Rebecca Rosen, Fragmentation: A wicked problem with an integrated solution?
(2013) 18:1 Journal of Health Services Research & Policy 61 at 64.
2 Yakov Flaumenhaft & Ofir Ben-Assuli, Personal health records, global policy and regulation review
(2018) 122:8 Health Policy 815 at 816 [Flaumenhaft & Ben-Assuli]; Effy Vayena et al, Element of a
New Ethical Framework for Big Data Research (2016) 72:3 Wash & Lee L Rev Online 423 at 423.](ViewImageLocal?handle=hein.journals/sjls2021&div=8&collection=&method=preview&ext=.png&size=3)
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