VCCC Data Driven Research Hub: a primary care focused linked data resource for health services research in Victoria, Australia

Alex Lee, Damien McCarthy, Rebecca J. Bergin, Allison Drosdowsky, Shake Li, Javiera Martinez Gutierrez, Chris Kearney, Sally Philip, Meena Rafiq, Brent Venning, Olivia Wawryk, Jianrong Zhang, Jon Emery

Background: Linked data resources are becoming increasingly important for cancer services research since patients interact with the health system using many different health services, each with their own data collections. Here we introduce the VCCC Data Driven Research Hub (DDRH), a linked data resource incorporating primary care, hospital and cancer registry data from Victoria. Primary care is the first point of contact for many patients’ interactions with the health system so such a resource fills an important gap in clinical data science research infrastructure.

Aims: To provide researchers with an understanding of the DDRH and describe the data sources that it incorporated and how they correspond to patients’ journey of care.

Methods: Descriptive analysis on eight different linked data sources, describing some main features of the data, including data quality and representativeness, as well as characteristics of patient cohorts.

Results: To the best of our knowledge this is the largest linked primary care data resource in Australia. With over 3 million patients included and covering 20 years of data, as well as unified governance and ethics processes, we believe this will be a useful resource for researchers and analysts interested in understanding Victorian patients’ utilisation of health services.

Conclusions: Similar linked data resources exist in other jurisdictions and we demonstrate the value of such a resource in Australia. Projects making use of this data are underway including in the study of: diagnostic intervals; primary care blood tests; and end of life care.