Flying Blind
The Australian Health Data Series

Flying Blind is a series of three reports dedicated to uncovering the acute levels of data fragmentation existing at all levels of Australia’s health landscape.

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Government Responds to Productivity Commisson Inquiry into Data Availability and Use

The Government’s response to the Productivity Commission’s Inquiry into Data Availability & Use is now available, one year after the Productivity Commission (PC) released its 658-page final report.

Background

Commissioned by the Government in March 2016, the PC Inquiry brought together research and submissions from public and private stakeholders across a range of industries and sectors. The report provides “guidance on where the benefits of greater data use may be most evident and ways that governments might engage with the public to generate community understanding of the costs, risks, and benefits associated with data sharing and use.” The PC report details specific recommendations and calls for significant reform as “marginal changes to existing structures and legislation will not suffice.”

Productivity Commission Recommendations

The PC recommendations address the global trend of increased data generation, associated risks and transformative opportunities, as well as the need for a modernised regulatory and governance framework to navigate the new data landscape. This framework centres around consumer data rights, a risk-stratified approach to data sharing and release, as well as consistent and transparent decision-making supported by legislative instruments. The goal of this is to create a culture of data confidence for all stakeholders in which privacy safeguards are balanced with the public-good utilisation of national data assets.

Government Response

The official response to the findings of the PC Inquiry arrived via a new website and a media release; both are more high-level than detail-oriented. However, the Government indicates overall acceptance of the PC findings and a commitment to:

“Invest $65 million over the next four years to reform the Australian data system and introduce a range of measures to implement the Productivity Commission’s recommendations.”

These measures include developing:

  1. A new ‘Consumer Data Right’ for citizens to increase transparency and control over their data

  2. A new government office and role of the ‘National Data Commissioner’ to oversee the public data system and the new data sharing and release framework

  3. A new suite of legislative and governance arrangements to facilitate data use under appropriately safeguarded conditions,

Health ‘exemplifies the problem’ but gets left off the agenda

The PC report provides an extensive case study of health data in Australia as ‘exemplifying the problem’. Decades of high-quality, publicly funded data exist and are ‘available’ but rendered essentially inaccessible for legitimate use by researchers because of issues with the data landscape outlined by the PC in their report. The use of de-identified health data for research purposes has significant public support as well as the potential to positively impact all Australians. The Government response document and accompanying media release both highlight health data for research purposes. One of the first pages of the response document features the following quotation, preceded only by a foreword from the Minister:

“Some 91% of Australians would be willing to share their de-identified medical data if it went towards research purposes.” Research Australia, 2016 as quoted in Government Response to Productivity Commission Review, 2018.

The media release also spotlights data use for health research. Esteemed medical researcher, health data advocate and former Australian of the Year, Professor Fiona Stanley is quoted saying that reform in this space will save lives; she is right. The example she gives highlights “how a lack of access to data relating to medications prescribed to women during pregnancy was inhibiting the ability of researchers to spot any emerging trends such as birth defects that could be linked to new drugs.” This is an example of data-informed ‘pharmacoepidemiology’, a form of population health research covered in a previous blog post. In Australia, this field is still fledgling despite having ‘access’ to long-term collections of high-quality, publicly funded PBS data and world-leading technical capabilities in privacy-preserving data-linkage. Why? Because accessing the data for legitimate research purposes has been so difficult.

The prominent use of health-related examples might foster the assumption that the Government response centres this as a priority area for reform. It doesn’t. Apart from the Research Australia quote, health is not mentioned in the response. Instead, implementation “will begin in the banking, energy and telecommunications sectors, and will be rolled out to other sectors over time.” It is true that many of the planned actions in response to PC recommendations (Data Sharing & Release Act, National Data Custodian, National Interest Datasets) will improve the data system overall and support data-informed health research as a result. It’s also true that data use in the health sector deserves to be made an explicit priority. As the PC describes it, “health exemplifies the problem” in terms of valuable opportunities lost due to systemic, bureaucratic impediments to access and use of data.

“Some of our best health researchers use UK health datasets, as ours are unavailable to them. Others wait up to eight years for access, in areas of life-saving significance. Inquiry participants highlighted a range of health sector data that could underpin substantial long lasting benefits for the Australian community. We cannot afford to ignore these.” Productivity Commission, 2017 in Overview of Inquiry Report into Data Availability & Use.

The benefits are, indeed, too great and the cost of delay is too high. Data-informed health and medical research does save lives; it improves service delivery, ensures patient safety, fosters discovery of new treatment protocols, allows early detection, permits quality control, enhances coordination of care, supports workforce development and increases our understanding of disease processes and outcomes. Not to mention that, as a nation, we are incredibly good at it.

 

History repeats as health is deferred, too complex

As the PC and the Government have made clear, these are necessary reforms and particularly so for health sector data. So why defer action in the area of greatest priority? The decision to delay health sector implementation in favour of banking, energy and telecommunications is indicative of the complexity involved in the health context. But this is a reason to act, not delay, especially given the potential positive impacts highlighted in the media release and throughout the PC report. The vague timeline for implementation in the health sector belies the urgency of this work. Current commitments are welcomed wholeheartedly but they do not go far enough. Leaning on health as the go-to example in rhetoric while failing to prioritise health in action is unacceptable. The danger of putting health on the back-burner from the outset is that reforms in this area will continue to be relegated to the ‘too-hard-basket’.

If there is a sense of scepticism it is not borne of cynicism but of experience. There has been no shortage of earnest, thorough and well-intentioned reviews, reports and commissioned inquiries, all supported by detailed and insightful submissions from experts, organisations, citizens and other stakeholders in the sector. A previous blog post covers just some of the many reviews relating to health and medical research over the last few years. Another, revisits implementation of recommendations from the McKeon Review of the health and medical research sector. Good intentions and good advice must translate to implementation. It is this follow-through that has been an ongoing issue, compounded by changing governments and shifting budgetary priorities.

Still waiting on the details

From a health research perspective, these reforms are welcome and long-overdue. Greater clarity, transparency and consistency in managing the availability and use of data are vital ingredients for benefiting society in the long-term. Countless organisations and individual researchers such as Professor Fiona Stanley continue to work tirelessly despite facing structural and systemic barriers to conducting data-informed health research. Removing these barriers must be a priority in enacting these reforms. Details are needed on how and when the Government plans to follow through on the PC recommendations in the health sector, including in the area of ethical review. We need a clear commitment from Government to lead initiatives where they will deliver the most impact. We can’t afford to wait. Our lives depend on it.

 

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