The Impact of General Data Protection Regulation on the Australasian Type-1 Diabetes Platform

Abstract

Australia is a region with a high incidence of diabetes with approximately 1.2 million Australians diagnosed with this condition. In 2012, the Juvenile Diabetes Research Foundation (JDRF - www.jdrf.org.au) provided funding to establish the national registry - the Australasian Diabetes Data Network (ADDN - www.addn.org.au) populated with extensive longitudinal data on patients with Type-1 Diabetes (T1D). The ADDN registry has evolved over time and now includes data on over 20,000 patients from 22 paediatric centres and 11 adult centres across Australasia, i.e., where the data is uploaded from hospitals and not manually entered. This data has historically been de-identified at source, however moving forward there is increased demand from the clinical research community to link between data-sets using fully identifying data. In this context, this paper explores the challenges this poses with regards to the evolving processes that must be incorporated for data collection and use, e.g. e-Consent, and especially the impact of General Data Protection Regulation (GDPR) on the ADDN processes.