Where to from here? Posthumous healthcare data, digital e(lectronic)-mortality and New Zealand's healthcare future.

Abstract

Ongoing improvements in digital data acquisition and storage has led to the phenomenon of e(lectronic)-mortality, where digital data can now exist for a potentially infinite period. Globally, many countries are facilitating the acquisition and researcher-led access to large-scale, population-based digitised healthcare data sets. Their utilisation has led to numerous positive advances in healthcare. New Zealand's medical record system is becoming increasingly digitised, and as a consequence there will be an ever-increasing resource of posthumous healthcare data stored digitally, including genomic information. Such data could be utilised for research purposes, and developing such a consolidated resource could improve healthcare outcomes in our own nation and allow us to parallel global progress in healthcare research trends. This viewpoint article explores the issues surrounding, and potential for utilisation of, a national resource of posthumous digital healthcare data. Currently, there appear to be no legal barriers to the large-scale acquisition and utilisation of posthumous healthcare data in New Zealand, however, previous legislation may not have been developed with developments in technology or e-mortality in mind. Ethically, culturally and socially there are many challenges to address, including issues surrounding obtaining consent, respecting privacy, management of incidental findings, maintaining anonymity and ensuring community support for such a resource. Despite the potential for widespread health benefits that utilisation of posthumous healthcare data in this country may facilitate, wide and ongoing consultation is required to examine how such a precious resource can be enabled for the downstream benefit of all New Zealanders.

Cite this paper

@article{Hoeksema2017WhereTF, title={Where to from here? Posthumous healthcare data, digital e(lectronic)-mortality and New Zealand's healthcare future.}, author={Katie Hoeksema and R. J. M. ter Wee and Alastair J. D. Macdonald and Parry Guilford and Jesse Wall and Jon Cornwall}, journal={The New Zealand medical journal}, year={2017}, volume={130 1459}, pages={64-70} }