Privacy gets in the way.

The CSIRO appears to want a weakening of privacy protection so health data is more easily sharable.

In its publication Strengthening Australia’s Pandemic Preparedness, the science agency canvasses change its 80 respondents said are needed in Australia’s data sharing arrangements as part of future pandemic planning.

The report stated that “data sharing limitations” exist because of “varying governance of health systems within and across jurisdictions,” as well as limited interoperability between systems.

Recommendations in the study included that Australia develop “national pandemic data standards”, improve its ability to link health and non-health data, as well as design “smart analytics that can share and analyse sensitive data at a national level”.

It’s well down into the detail of the report before CSIRO raised privacy as inhibiting pandemic responses.

The report said “stakeholders noted that there are multiple limitations with access and sharing of health data in Australia for decision making”, and that these included “an inability to share identifiable information”.

The report didn’t canvass how this might change, alternative models stakeholders wanted, nor how privacy could be protected if identifiable information were shared/

iTnews has asked the agency to comment.

Less contentiously, the agency suggested the Australian Digital Health Agency be given an expanded remit to build “data standards to support a pandemic response”, using existing standards as a foundation for information exchange, and aligning national and international standards “to aid global collaboration”.

The report said linking health and non-health data (such as human movement datasets, for example) “can help to anticipate patterns of spread during pandemics, provide projections on the success of interventions, and inform response decision making by utilising predictive
modelling and epidemiology methodologies”.

However, such linkage can only be made “where there is consistency in ethics requirements, government approvals, and legal instruments across jurisdictions”, and calls for partnerships between health organisations, government, and the private sector.

CSIRO suggests improvements to health data analytical capability could include cloud-based systems, software “that is responsive to different input data granularity”, and “dynamic access permissions that allow real-time access and control of the data by the contributing organisations.”

Update: A CSIRO spokesperson sent the following statement to iTnews:

“The Strengthening Australia’s Pandemic Preparedness report does not suggest weakening Australian privacy standards.

“The report is the result of consultations with 146 experts from 66 organisations across government, industry, and the research sector.

“Several of those respondents noted an inability to share identifiable information as a barrier to medical response and policy. 

“Recommendation 20 of the report provides a potential solution that retains privacy. Smart analytics that share and analyse sensitive data at a national level would maintain privacy while generating useful, deidentified insights.”

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