While it continues to battle public indifference to personally-controlled electronic health records (PCEHRs), the Australian government is quietly looking for bright sparks to put forward ideas on how to use the records for analysis.
The Australian Privacy Foundation has pointed to this tender from the government. In it, Canberra requests a “Framework for secondary uses of My Health Record”.
The outcome of the tender would be a set of standards: “The final Framework will enable the System Operator (currently the Secretary, Department of Health) to make informed decisions about the benefits, risks and costs of options presented for secondary uses of My Health Record system data. Respondents should note that the Department intends to assess expressions of interest and short list submissions to identify organisations who have the experience and expertise required.”
It's perhaps no coincidence that the government also recently decided My Health Record would be an opt-out rather than an opt-in system, because so few people were opting into the slowly-advancing multi-billion-dollar white elephant scheme.
After a decade of work, My Health Record nee PCEHR has reached 10 per cent of the Australian population. The National E-Health Transition Authority's 2015 annual report also notes that the hundreds of millions so far spent have not yet completed a system for handling complex clinical documents.
The Australian Privacy Foundation's statement notes that while we're promised that outsiders would only be able to mine anonymised data, that's a troublesome concept.
Dr Roger Clarke, ANU academic and long-time privacy watcher, notes that “rich data-sets are vulnerable to re-identification procedures. These problems afflict all big data collections that are intended to assist in the management of long-term relationships.
“The problems are compounded by the expropriation of data to support purposes extraneous to the original context of use, such as longitudinal research studies,” Clarke adds.
Since the government also holds records through Centrelink, Medicare and the tax system, re-identifying individuals from their My Health Records would be simple. ®