Informatics and Patient Data

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Discipline leader: Professor John McNeil

Data Committee Chair: Professor Jim Buttery

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The objective of this Discipline is to efficiently integrate and leverage the data activities underway in all health services. Our goal is to improve access to patient data for quality measurement, while also systematically building research data in both identifiable and de-identifiable forms. 

Monash Partners already has a national leadership position on registries. Monash University’s School of Public Health and Preventative Medicine (SPHPM) is a centre of excellence in registry science. SPHPM has led the development and application of clinical quality registries nationally since the late 1990s. Prof John McNeil leads this service, which is pivotal in linking clinical outcomes to research priorities. 

SPHPM hosts more than 30 national and state registries, funded by a wide range of sources. Clinical specialties and partners organisations within Monash Partners contribute to these registries.

Examples of SPHPM-managed registries include:

· National Prostate Cancer Registry (funds: Movember)
· Victorian Severe Trauma Outcomes Registry (funds: Victorian Transport Accident Commission)
· National Breast Implant Registry (funds: Commonwealth Government)
· National Bariatric Surgery Registry (funds: Commonwealth Government).

Of critical importance, the Trauma, Cardiovascular Disease and Cancer Registries now provide benchmarked hospital ‘Quality of Care Reports’ - an objective base highlighting problems and hence driving translational research and healthcare improvement.
 
Through these reports, SPHPM is providing benchmarking information of relevance to clinicians, administrators, hospital boards and Board Quality committees. These provide, for the first time, the information needed to determine how the outcomes they achieve compare with those of other similar institutions. Without such information they would be unaware of many quality related problems. 

As an example, the Prostate Cancer Registry recently identified a high volume unit with a high ‘positive margin rate,’ signifying incomplete tumour removal. This information led to greater supervision of trainees undertaking surgery and a change in policy of the Urological Society of Australia regarding the supervision of trainee surgeons. However the more subtle effect is to stimulate comparisons within units – as no surgeon wants to remain at the inferior end of the distribution of results.

The success achieved by an applied program of registry development will be applied through the Discipline in an effort to coordinate the disparate data collections within the collaboration – and so enable access to core patient data across the collaboration. It will also foster maximum data utilisation and so, reduce the likelihood of costly, orphan data series. 

Maximising the capacity of patient data series to be ethically used in research activities, while also maximising the potential for scale and efficiency in tissue and blood collections and their associated data, will also be a focus of this Discipline.