Digitisation of health data, including medical records and genomic information, is becoming common practice in many countries around the world. With this improvement in digital technology, a new phenomenon has…
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Digitisation and utilisation of large healthcare data sets is becoming increasingly common around the world, with such use leading to benefits in healthcare and disease prevention. The largest and arguably most important healthcare data set will become posthumous healthcare data sets. New Zealand is increasingly digitising and centralising healthcare records, and there would be benefit to utilising posthumous healthcare records for research and management purposes. However, there is a lack of clarity surrounding the regulatory control around such data sets, and therefore it is unclear how to best utilise such data for the benefit of all New Zealanders. This paper explores an issue which is becoming increasingly relevant to all New Zealanders.
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.