A world first in cancer data collection Evaluation of Cancer Outcomes Trial Nicole Hopgood Health Information Manager Leigh Matheson Health Information Manager

Ground breaking approach to cancer data collection… A world first project involving the collection of clinical cancer data across the entire Barwon South West region A partnership between the Victorian Department of Health, Barwon South Western Regional Integrated Cancer Service* and The Cancer Council Victoria Evaluation of Cancer Outcomes Trial *The Integrated Cancer Services are funded by the Victorian Government as part of Victoria's cancer reforms

Project Objectives Trial a model of cancer data collection across a regional area of Victoria Capture a nationally developed and agreed set of data items Provision for statistical analysis and reporting Clinical Treatment Patient Outcomes Recurrence Population view of the occurrence of cancer in the area Support current incidence and surveillance data produced by the Victorian Cancer Registry (VCR) Evaluation of Cancer Outcomes Trial

33,000 Sq kms Pop – 340,000 Approx. 230,000 live in Barwon Sub Region Approx patients - diagnosed with cancer per annum Approx patients - active prevalence 9 sites provide cancer treatment Why this region for a world first project? Evaluation of Cancer Outcomes Trial

The impact of cancer on our community ‘When news broke in May (2006) that a number of RMIT staff members had been diagnosed with brain tumours, questions were raised about a possible ‘cancer cluster’.’ ‘The details of the cancers showed it wasn’t really a brain cancer cluster after all’ (Registry Statistician and Information Manager Vicky Thursfield). ‘A similar process was used in April (2006) to try to test the idea that fluoridated water causes cancer.’ Figures going back to 1982 were used to test the theory... ‘Rates in metropolitan Melbourne, an area that has had fluoridated water for a long time, were actually lower than the rest of Victoria’ (Ms Thursfield). Evaluation of Cancer Outcomes Trial From "Cancer News" issue 193, July 2006

“ It can’t be that difficult to collect, can it?” Two contrasting viewpoints… Surely we already have cancer staging information, as it’s so simple and routine to collect Collecting information on cancer stage, especially TNM* detail may be a greater challenge than the human genome project Viewpoints from “Collection of population-based cancer staging information in Western Australia – a feasibility study”, * Tumour Nodes Metastases. Evaluation of Cancer Outcomes Trial

Graphic from website "Creating Passionate Users"

Bridging the gap in cancer data collection Evaluation of Cancer Outcomes Trial Recurrence Information (Primary and Metastatic) Treatment Information Breast Tumour Stream specific information Tumour Size and Lymph Node Information Cancer Staging Information Death InformationBasic Death Information Basic Primary Tumour and Metastatic Tumour Information Patient Demographic Information What is collected as part of the ECO pilot What is currently collected and sent to the VCR

Who is involved? Evaluation of Cancer Outcomes Trial St John of God, Geelong St John of God, Warrnambool Geelong Private Hospital Barwon Health Colac Area Health Portland District Health Western District Health Service South West Healthcare (Warrnambool & Camperdown)

The technical stuff… Evaluation of Cancer Outcomes Trial Data repositories are currently being built at each site to allow for monthly transfer of ECO data to the Victorian Cancer Registry

Breast Cancer Stage breakdown ECO Trial Data January - October 2008 (All Public Sites) Preliminary Findings

ECO Trial Data January - October 2008 (All Public Sites) Preliminary Findings Breast Cancer – Stage 3&4 Treatment breakdown

ECO Trial Data January - October 2008 (Major Regional Site) Preliminary Findings Treatment modality across all Tumour Streams

ECO Trial Data January - October 2008 (Major Regional Site) Preliminary Findings Most common Metastatic sites

Innovation benefits everyone! Patients and Community Improved quality of care Better Outcomes Healthcare Professionals Increased data quality Better access through comprehensive data repositories Evaluation of Cancer Outcomes Trial

What have we learnt so far… 8 regional/rural sites = IT headache! More than just a Sunday drive… Who are you, What are you doing again? Can patients/health services opt out? A fractured approach to the patient journey Evaluation of Cancer Outcomes Trial

Where to from here… What may seem impossible today, may be the norm tomorrow

Thank You for listening!