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When is ‘Enough’ data really too much? Data capture in the CIC cancer project

Theophilus, M., Ives, A., Millar, L., Bowland, G., Render, L. and Saunders, C. (2018) When is ‘Enough’ data really too much? Data capture in the CIC cancer project. Asia-Pacific Journal of Clinical Oncology, 14 (S7). p. 103.

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Aims: The aim of the Continuous Improvement in Care (CIC) Cancer research program is to explain variations in health outcomes, which at present cannot be understood with conventional health outcome measures. To achieve this, the project is collecting data reflecting not just the disease process but results of procedures, processes, structures, and systems in the continuum from prevention, diagnosis, treatment, survivorship to end of life care.

Method: Data from both the clinical and patient perspective will be measured. The project will utilise an extensive platform of data and evaluate how best to implement the system within both the public and private sector for a range of cancer types including colorectal. The International Consortium for Health Outcomes Measurement (ICHOM) standard sets of outcomes measures will be used with the addition of data and outcomes relevant to WA patients.

Ongoing clinical data will be collected by clinicians. Wherever possible data will be extracted electronically from other data systems, securely transferred and then data items mapped to automatically populate the relevant dataset field within the ‘Site System’. Patient reported outcome measures (PROMs) will be collected at designated time points by either the clinician in consultation with the participant or the participant will complete these via a web‐based ‘PROMS Platform’ using a computer, tablet, or mobile telephone. The PROMs dataset will be transferred to the ‘Site System’. De‐identified data will be regularly transferred to the ‘CIC Cancer Research Database’ for evaluation and feedback to the hospital sites as part of a quality improvement cycle.

Results: Mapping is underway for colorectal cancer services at SJoG Midland and RPH. Process enablers and barriers will be discussed.

Conclusion: This pilot will inform the model for data capture in four other cancers – lung, breast, prostate and ovarian.

Item Type: Journal Article
Murdoch Affiliation(s): Centre for Comparative Genomics
Publisher: John Wiley and Sons
Copyright: © 2018 John Wiley & Sons Australia, Ltd.
Other Information: Poster from: COSA's 45th Annual Scientific Meeting, Mesothelioma and Gastro‐Intestinal Cancers: Technology and Genomics, 13–15 November 2018, Perth Convention and Exhibition Centre, Perth, Western Australia
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