Towards establishing a national colorectal cancer database: Lessons learnt from Bio21 molecular medicine informatics model

Background: Collecting data regarding treatment and outcomes of patients with cancer, for both audit and research purposes, is a common but challenging goal. Modern technology promises greater ease and sophistication for data collection, linkage and analysis, but many traditional challenges remain. Method: Here we relate our experience of an initiative aimed at multicentre colorectal cancer data collection, that is, in collaboration with the Colorectal Surgical Society Australia and New Zealand, moving towards a national initiative. Results: Initiated from a single site in Melbourne, using a range of data collection and linkage processes, and optimizing the use of modern technology, we have now implemented and sustained comprehensive and multidisciplinary data collection across multiple Victorian and interstate institutions. Specific challenges related to ethics and privacy, data accuracy and completeness and data ownership have been addressed and many lessons have been learnt. Multicentre audit and research queries can now be conducted with confidence that privacy, security and intellectual property issues are addressed. Research output, including many studies that were not previously possible, has informed a broad range of topics relevant to colorectal cancer. Conclusion: Multicentre and comprehensive data collection for colorectal cancer is achievable and sustainable and promises great benefit as an audit and research tool. Similar initiatives could be established for other tumour types.