Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2019

Do we have a Black Cat in a Dark Room? - Looking for patient data in cancer research    (#154)

Michelle Foong 1 , Leon P Botes 1 2 3 , Mamta Porwal 4 , Shoma Barat 3 , Michael Shum 2 3 , Diane Schipp 2 3 , Melvin Chin 1 2 3 4
  1. Prince of Wales Clinical School, The University of New South Wales (UNSW), Sydney, New South Wales, Australia
  2. Haematology and Oncology Department, Prince of Wales Hospital (POWH), Sydney, New South Wales, Australia
  3. South Eastern Sydney Local Health District (SESLHD) , Sydney, New South Wales, Australia
  4. Translational Cancer Research Network (TCRN), The University of New South Wales (UNSW), Sydney, New South Wales, Australia

Aims:

This study evaluated cancer data quality between primary (clinical care) and secondary (research/government) data repositories for completeness, correctness, concordance, and timeliness.

Methods:

Ethics approval (2019/ETH10527) was granted to evaluate data between January 2014 and December 2018, from data repositories active at POWH: MOSAIQ™, Cerner Powerchart™ (primary health records), Retrun to Notifier section of the NSW Clinical Cancer Registry(RTN-NSWCR), Health Science Alliance Biobank(HSA Biobank), and the tumour specific databases for Breast Cancer(BCDB) and Sarcoma(ACCORD-BioGrid).

For the domains of patient demographics, tumour diagnosis, investigation results, treatments, and health outcomes, all data points from the 6 databases were recorded. A sample of patients with breast cancer and sarcoma who appear across the 6 databases had selected data points compared to measure completeness, correctness, concordance, and timeliness.

Results:

We have identified over 500 data points in which 16 common data points were selected for further analysis. A total of 989 patients with breast cancer and 102 with sarcoma were registered as new patients in MOSAIQ™ and Powerchart™ between 2014-2018.

In July 2019, of the breast cancer cohort, 680(68.8%) and 342(34.6%) were found in the RTN-NSWCR and BCDB respectively. Of the sarcoma cohort, 70(68.6%) and 64(62.7%) were found in the RTN-NSWCR and ACCORD-BioGrid respectively.

The RTN-NSWCR data was complete until December 2016. No/minimal data was found in the RTN-NSWCR, BCDB, and ACCORD-BioGrid after July 2018(sarcoma) and September 2018(breast cancer), December 2018, and November 2018, respectively.

Conclusion:

The BCDB contained unique details on diagnosis. Along with specimen data, the HSA Biobank facilitates linkage to clinical data including the Pharmaceutical Benefits Scheme (PBS), Medicare Benefits Schedule (MBS) and National Death Index (NDI) for researchers. Information on ACCORD-BioGrid is arranged by pre-treatment, first-consult and follow-up directories.