The big question
Do data-sharing systems, like My Health Record, improve society or threaten security?
Dr Dan Angus
Senior Lecturer
School of Communication and Arts
Faculty of Humanities and Social Sciences
Dr Dan Angus
General purpose data-sharing systems like My Health Record are dangerous, blunt instruments, and ‘solutions in search of problems’.
My Health Record is an example of a top-down approach to technology design, where one takes an existing (often hyped-up) technology and creates a problem for it to solve. This approach stands in contrast to co-design, which seeks to work with target groups to identify concerns and design the most appropriate solutions.
Because of its homogeneous top-down approach, the architects of My Health Record have not considered or respected the inputs and perspectives of the diverse community of end-users. The rhetoric of the top-down approach is easy to spot, often of promised riches: efficiency, cost savings and simplicity.
Experience shows that this ‘one-size-fits-all’ approach to technology design will almost always fail to achieve these promised riches. And, when employed in systems such as My Health Record, it also suggests that insufficient care has been taken to safeguard vulnerable users.
Dr Liam Pomfret
Associate Lecturer in Marketing
School of Business
Faculty of Business, Economics and Law
Dr Liam Pomfret
Data-sharing systems can potentially help improve society, particularly in areas like public health, but only if carefully designed and implemented. This requires systems to be built with a proper understanding of potential risks, and governed by an effective legal framework and controls. Ultimately, poorly designed approaches like the proposed My Health Record satisfy none of these conditions, and only create worse problems than they were intended to address.
My Health Record is a privacy and security nightmare. Our health records are some of the most sensitive information we have, yet this system offers minimal protection for the large amounts of data it will gather, data which can then be readily matched with other data sources. It’s not a question of if this data will be misused, it’s a question of when, and by whom.
Dr Caitlin Curtis
Research Fellow
Centre for Policy Futures
Faculty of Humanities and Social Sciences
Dr Caitlin Curtis
The idea behind My Health Record is a great one. Individuals and society should benefit from a digital health record that follows you to every clinic and hospital that you visit, and that you can view at any time.
The implementation raised some issues. Allowing corporations access to the data and granting warrantless access to law enforcement raises questions about who the scheme is really designed to benefit. This really speaks to the big question in the new data economy: who owns the data and who should be allowed to access and profit from it?
Guido Zuccon
Senior Lecturer
School of Information Technology and Electrical Engineering
Faculty of Engineering, Architecture and Information Technology
Guido Zuccon
The advantage of My Health Record initiative for primary healthcare delivery is through the sharing of critical information across siloed healthcare providers. Its use in secondary research is to better study health conditions and the effect of treatments, as well as healthcare processes and delivery at an unprecedented scale for Australia.
For example, the analysis of the My Health Record data using recent advances in data science could deliver improved health outcomes and inform health services planning and delivery. From an ethical and security standpoint, some legitimate concerns do exist – such as the possible re-identification of data – and there is some way to go to reap the benefits while avoiding the risks.
Professor Andrew Burton-Jones
Associate Director, Research
School of Business
Faculty of Business, Economics and Law
Professor Andrew Burton-Jones
Data sharing systems like My Health Record are essential for improving the care of Australian citizens. Many citizens receive suboptimal care because of information problems that My Health Record can help alleviate.
Do the new systems raise a risk to security and privacy? Yes. But all systems raise risks to security and privacy. And current systems have other serious limitations too. The question is whether our nation’s leaders are willing to commit the resources to make My Health Record work.
This commitment must go beyond My Health Record to consider the larger digital transformation of health care that we need.
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