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 and now hosts more than 30 national and state registries. The service is pivotal in linking clinical cancer outcomes to best practice treatment and research priorities
The capability to collate and meaningfully analyse patient outcomes data forms an essential base for any future goals in improvement of outcomes whether from precision medicine, clinical trials or health system research.
Prostate Cancer Registry
MPCCC has demonstrated its capability in the registries sector, with the successful development and implementation a bi-national Australia & New Zealand prostate registry with funding support from the international charitable foundation Movember.
Validation of MCCC’s leadership in clinical cancer registries has been offered internationally through involvement with the International Consortium on Health Outcomes Measurement (ICHOM)’s prostate working group, an ambitious group founded by the Harvard Business School to progress Michael Porter’s health care improvement framework which involves timely, reliable, credible, repeated and transparently reported measurement of patient meaningful outcomes as a mechanism to guide researchers, clinicians, policy makers and funders towards a common goal. This alliance led to the development of an international set of standards for monitoring prostate cancer.
In 2014 Monash PCR team assisted with the setup of both Great Britain and Ireland prostate cancer registries, and have been invited to international meetings to progress these efforts in the UK and Japan. In addition the Monash PCR has provided advice to encourage the establishment of similar efforts in New Zealand, Singapore, and South Africa.
More locally the PCR at Monash has formed effective partnerships with other Monash groups to develop new collaborative prostate cancer research projects in Victoria. Several publications have emerged identifying patterns of care and potential areas for improvement of patient outcomes (eg. Evans SM1, Millar JL, Frydenberg M, Murphy DG, Davis ID, Spelman T, Bolton DM, Giles GG, Dean J, Costello AJ, Frauman AG, Kearns PA, Day L, Daniels C, McNeil JJ. Positive surgical margins: rate, contributing factors and impact on further treatment: findings from the Prostate Cancer Registry. BJU Int. 2013 Oct 15. doi: 10.1111/bju.12509.); The State Of TRUS Biopsy Sepsis: Readmissions To Victorian Hospitals With TRUS Biopsy-Related Infection Over 5 Years. Roth H, Millar JL, Cheng AC, Byrne A, Evans S, Grummet J. BJU Int. 2015 Jul 14. doi: 10.1111/bju.13209; Predictors of Prostate Cancer Specific Mortality after Radical Prostatectomy: 10 year oncologic outcomes from the Victorian Radical Prostatectomy Registry.Bolton D, Papa N, Ta A, Millar J, Davidson AJ, Pedersen J, Syme R, Patel MI, Giles GG. BJU Int. 2015 Jul 14. doi: 10.1111/bju.13112. [Epub ahead of print]; Prevalence of Baseline Erectile Dysfunction (ED) in an Australian Cohort of Men with Localized Prostate Cancer.Ong WL, McLachlan H, Millar JL.J Sex Med. 2015 May;12(5):1267-74. doi: 10.1111/jsm.12867. Epub 2015 Apr 1.
Colorectal Cancer database
Cabrini Monash University Department of Surgery in conjunction with the Monash Department of Epidemiology, have instituted the Cabrini Monash University Colorectal Cancer Database. This database is housed at Monash Department of Epidemiology and Preventive Medicine, provides real-time browser-based internet connectivity to allow data collection in relation to all aspects of the care of colorectal cancer patients, including the comorbidities and subsequent follow-up. It also includes data in relation to both chemotherapy and radiation therapy where appropriate. The database includes detailed data from both the public and private sector at Cabrini Hospital, The Alfred Hospital and The Avenue Hospital in approximately 1,700 patients. This database has provided a collaborative conduit for both clinical and translational research, resulting in two separate NHMRC grant successes. The database has been accepted as the Monash Partners wide database and now includes data from Monash Health at both the Clayton and Dandenong campuses and Peninsula Health at the Frankston campus. The Colorectal Surgical Society of Australia and New Zealand invited submission from us in 2011 and have subsequently adopted this database in a scalable format as the binational database of the CSSANZ across Australia and New Zealand, with currently signup of over 70 centres. The first 1000 patients on an internet-based colorectal neoplasia database across private and public medicine in Australia: development of a binational model for the Colorectal Surgical Society of Australia and New Zealand. McMurrick PJ, Oliva K, Carne P, Reid C, Polglase A, Bell S, Farmer KC, Ranchod P.Dis Colon Rectum. 2014 Feb;57(2):167-73. doi: 10.1097/DCR.0000000000000041.
Victorian Melanoma Registry
Victoria’s Melanoma Service registry has 150 data items on over 7000 patients going back over 20 years (2nd largest in Australia) see also section 2.6.1 the Melbourne Melanoma Project.
Victorian Lung Cancer Registry
To date the Victorian Lung Cancer Registry (VLCR) has registered over 1,400 new cases of lung cancer recruited from 8 institutions across Victoria reflecting activity developed in metropolitan public, private as well as regional institution activities. The initial report describes accounting for >20% of all new cases over this time period and provides the first capability for true benchmarking of process and outcome in lung cancer management.
The VLCR now seeks to roll-out data collection across Victoria to drive quality improvement across the state and provide a model for a national registry.
The VLCR has published the initiation phase and has commenced in international partnerships through the International Collaboration on Health Outcomes to develop and contribute to a strategy that may facilitate a global approach to foster more systematic measurement and reporting of the outcomes that matter most to patients with lung cancer. The Victorian Lung Cancer Registry pilot: improving the quality of lung cancer care through the use of a disease quality registry.Stirling RG, Evans SM, McLaughlin P, Senthuren M, Millar J, Gooi J, Irving L, Mitchell P, Haydon A, Ruben J, Conron M, Leong T, Watkins N, McNeil JJ.Lung. 2014 Oct;192(5):749-58. doi: 10.1007/s00408-014-9603-8. Epub 2014 Jun 8.
Other Clinical Quality Cancer Registries
Others in developmental phase include pancreas, gynaeoncology, breast, kidney and thyroid.