Regulation and Perception Concerning the Use of Health Data for Research in Australia

Abstract

The primary objective of this review is to provide an overview of the issues involved in balancing privacy and access in the context of health research.  Appropriate collection, management, linkage and interrogation of health data can play a vital role in improving individuals’ health and wellbeing.  However, the assembly and use of linked population, clinical and genetic health databases in the research and policy analysis environments raises privacy, confidentiality and ethical concerns.

The topic of our review is of current interest in the context of the Australian Government National Collaborative Research Infrastructure Strategy (NCRIS) investment in the Population Health Research Network (PHRN), which aims to provide improved accessibility to health-related data for the research sector. This initiative is likely to attract new researchers to the field of population health, and the current review may assist them in taking account of privacy regulation and perceptions when designing study and consent processes.

Although there is little evidence of privacy complaints or breaches in health research, it seems clear that privacy regulation and privacy perception are both key factors in the health research context, acting as potential restraints on some types of research that could deliver considerable public benefit.  In particular, significant concerns regarding consent and de-identification remain in the community.

Recent Australian Law Reform Commission recommendations leave room for technical solutions to play an increased role in allowing personal information to be de-identified for research purposes.  Recent advances in the techniques for de-identifying personal information provide some hope that de-identification can occur without a negative impact on data quality.