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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Guest Post by Professor Sallie Pearson - Punching below our weight: when data lies dormant

Guest Post by Professor Sallie Pearson

Thanks to a billion-dollar annual investment in the Pharmaceutical Benefits Scheme (PBS) the bulk of Australia’s prescription medicine use is subsidised. One obvious benefit to this is that prescription medicine is more affordable for Australians. A less obvious benefit is that routinely collected PBS data provides comprehensive representation of prescription medicine use at a population level. This makes it an extraordinarily valuable data resource. The linkage of PBS, MBS and other Commonwealth collections, such as those held by the Department of Social Services, can expand our opportunities to explore value, real-world use and pivotal issues such as equity of access.

Unfortunately, comprehensive post market pharmaceutical surveillance does not occur routinely in Australia. This limits our ability to answer even very basic questions, for example, ‘does a person go to a specialist to get a particular medicine?’ and ‘how is the medicine continued, is it continued by a specialist or by a general practitioner?’ This kind of information about how people navigate the system is actually very important and yet we do not have routine access to data that links doctor visits (MBS claims) to PBS prescription claims.  

A similar issue arises with a question such as ‘how are people monitored after they are prescribed a medicine?’ or ‘what are the outcomes associated with prescription drug use? Post-market studies of drugs are critical in addressing known limitations of clinical trials including drug effects and safety on different population groups (who may not have been represented in clinical trials); identification of rare adverse events; and patient follow-up on a longer timeframe than the trial period. This kind of research has the potential to save lives and improve health outcomes dramatically. For example, by identifying patterns of over or under-prescribing or highlighting previously unknown drug interactions.

Yet in Australia, less than 250 population-based studies have been conducted that use PBS data for research in the last 25 years. Of these 250 studies, just 40 looked at medicine use and outcomes in the population. Fewer than 30% of the studies linked individual-level PBS claims to other health data, despite the fact that such linking of different datasets permits asking more complex questions and can yield even more potential benefits.

This field of ‘pharmacoepidemiology’ is still fledgling in Australia despite over two decades of routinely collecting this data. For comparison, Nordic countries have used their health databases to produce double our research output in this field in just 6 years!

The issue is not the lack of data or quality of data collections, nor is it our technical readiness. Why then is Australia punching below our weight in this area? There have been some really practical impediments to doing some very basic work in this regard. The fragmented data systems in Australia make it difficult, to systematically capture or measure impacts on questions raised above. For example, the agency administering the MBS and PBS is are subject to strict data legislation that restricts linkage of these data, except for specific purposes. As highlighted in the Flying Blind report and blogs, issues including outdated legislation and incoherent policies, poor governance and data fragmentation have made it difficult to access and utilise this rich data effectively.

In my presentation available here, I have shared some of the challenges and the potential of big health data in the area of pharmacoepidemiology research. Researchers can spend months or even years working through various complexities in obtaining access to data. What is particularly painful is that the level of difficulty tends to increase the more valuable the data collections are.

Researchers' access to data 

Obtaining ethics approvals alone is a herculean task, left only to the most dedicated and persistent researchers.  A back-of-the-envelope calculation on what is required to conduct a whole-of-population medicine safety study indicates that researchers would need approvals from at least 10 different ethics committees, besides working through processes of over multiple data custodians across a maze of data collections, agencies and jurisdictions.

All is not doom and gloom though. There are many initiatives from different sources that are working towards a vision for more timely and comprehensive data access. Listed below are some projects that are shifting Australia from opportunism in this area to careful planning.

While these initiatives are important steps in reducing data fragmentation and enabling data access, there is also a need to push for overhaul of privacy and data sharing legislation, ensure a cogent governance model and streamline ethics approval processes. The Productivity Commission’s recent inquiry report on ‘Data Availability and Use’ provides a range of recommendations to reform the data environment in Australia to catch up with competing economies. If the key facets of the recommendations are implemented,  they can truly transform the Australian health and medical research data environment, the value of which cannot be overstated in terms of our lives, health and wellbeing.

 

Sallie Pearson’s complete presentation is available here.

 

 

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