Data-Driven Research Program Data-Driven Research Program Linked - PowerPoint PPT Presentation

VICTORIAN COMPREHENSIVE CANCER CENTRE Data-Driven Research Program

Data-Driven Research Program Linked Longitudinal Retrospective Health care continuum Secondary use Bottom-up

Data-Driven Research Program Hospital Primary Care Population registries Clinical registries Registry trials Patient

The data problem Contents Clinical Population Health Government - Cardiology - Cancer Registries - Admitted Episodes - Dermatology - Diabetes Registries - Australian Cancer dB - Diabetes - Rare Diseases - Bureau Statistics - Oncology - Screening Registries - Death Dates/Cause - Clinical Trials - Quality of Life - MBS, PBS Primary Care Administration In-Hospital - Diagnosis - Admissions - Imaging - Medications - Demographics - Pathology - Prevention - Events - Pharmacy - Referrals - Procedures - Radiology - Test Results - Audit - Scheduling p. 7

Data sharing framework

Data sharing framework Contents Collaboration framework for researchers • Evergreen agreement to facilitate multi-site collaborative research • Ethics approval of BioGrid data linkage platform for each institution and database linked • Waiver of consent or opt-out consent for hospital data linked to BioGrid platform p.9

BioGrid Members and Collaborators Contents p.10

Data sharing framework Contents Federated solution for sharing data • Federated data sharing platform with all data transfers and linkages performed over secure encrypted network connections • Probabilistic identity matching or deterministic cryptographic hashing matching to generate record linkage keys • Data custodian retains FULL control over access to their data • Data access controlled and provided de-identified (coded) p.11

Primary Care Data Hospital Administrative & Clinical Outcomes Data Registries Data Patient Reported Outcomes Data

Primary Care Data Hospital Administrative & Clinical Outcomes Data Registries Data Patient Reported Outcomes Data

Tumour Pts linked Avg # appts Hospital Diagnoses Pts linked Avg # appts Stream primary primary care primary primary care care 12m pre dx care 12m post dx Breast 197 11.4 1,984 183 11.8 Haematology 178 13.5 3,033 172 15.2 Lung 169 15.7 2,711 154 15.1 Lower GI 133 12.9 1,432 128 13.6 Head & Neck 117 11.6 1,378 110 12.1 Urological 110 12.8 2,130 99 12.3 Neurological 71 10.1 900 70 13 Upper GI 67 16.1 1,307 67 14.5

Tumour Pts linked Avg # appts Hospital Diagnoses Pts linked Avg # appts Stream primary primary care primary primary care care 12m pre dx care 12m post dx Breast 197 11.4 1,984 183 11.8 Haematology 178 13.5 3,033 172 15.2 Lung 169 15.7 2,711 154 15.1 Lower GI 133 12.9 1,432 128 13.6 Head & Neck 117 11.6 1,378 110 12.1 Urological 110 12.8 2,130 99 12.3 Neurological 71 10.1 900 70 13 Upper GI 67 16.1 1,307 67 14.5

More than data…

Chris ris Kearney Program Man anager - VCCC Da Data Dri Driven Research Program, Univ iversity of of Melb lbourne ch chris is.kearney@unimelb lb.edu.au Ge Genevie ieve Rosewall Project Officer, Bio ioGrid Australia lia enquir ires@biogrid id.org.au Victorian Comprehensive Cancer Centre Level 10, Victorian Comprehensive Cancer Centre 305 Grattan Street, Melbourne VIC 3000 Tel: 03 8559-7160 | www.viccompcancerctr.org Victorian Comprehensive Cancer Centre Ltd trading as Victorian Comprehensive Cancer Centre ABN 84 140 233 790 We acknowledge the Traditional Owners of the lands on which we work and pay our respects to their elders past and present.