Project title

VCCC Data Connect: Understanding cancer patients’ journey of care

Investigators

Dr Alex Lee, Research Fellow

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Work done in collaboration with the Data Connect team: Damien McCarthy, Rebecca J Bergin, Dr Javiera Martinez Gutierrez, Chris Kearney, Dr Shaoke Lei, Sally Philip, Dr Meena Rafiq, Dr Brent Venning, Olivia Wawryk, Dr Jianrong Zhang and Professor Jon Emery

In an Australian first, the linking of primary care and hospital data has been made possible through Data Connect, a major collaboration between the VCCC Alliance, the University of Melbourne, hospitals and BioGrid Australia.

Leveraging the power of data

The overall objective of this work is to improve outcomes for cancer patients and to inform policy decisions by bringing a data-driven lens to the entire patient journey of care.

Data-driven insights into patients' journeys from diagnosis to treatment and beyond will help practitioners build a more complete picture of the patient experience, with the opportunity to identify factors that contribute to cancer outcomes.

Since cancer and other healthcare services are delivered in multiple locations and settings, health data is often collected in isolation, siloed in separate systems, and bound by governance complexities and other challenges, preventing its use for effective, scalable health services research.

Connecting healthcare data from general practice and hospitals is therefore essential for understanding the factors that contribute to delayed cancer diagnosis and treatment.

When cancer patients are diagnosed and move from primary to hospital care, and back for post-treatment care, this can impact how their health issues are identified and solved.

Bringing together data sources will help to better understand where patients access care, how they’re being diagnosed and their quality of life after treatment.

Technology and governance are the keys to success

The potential to use these data can only be realised with high quality data infrastructure and strong governance and ethics processes. With these in place, data can be securely shared and analysed, while patient privacy is protected.

A range of interesting analyses can then be carried out:

• descriptive analysis present to uncover current and historic trends related to cancer patients;
• predictive analysis to predict cancer risk, understand the effect of interventions and policy changes;
• And finally, using these analyses to implement positive changes for patients, through policies and behaviour changes as well as clinical decision support.

The challenge is underpinned by the fact that the healthcare system is fragmented, with data residing across different institutions and also in different jurisdictions. Working with multiple stakeholders can take many years and organizing the ethics clearances is often very challenging.

This means that any system that brings together data across these different sources has to be developed in a way that addresses privacy concerns and protects against data breaches.

Partnering with BioGrid to resolve linkage and governance challenges

VCCC Data Connect uses BioGrid’s federated data infrastructure to address these challenges by providing data through a single service. This removes the need for researchers to apply for data access through multiple different organizations, while also meeting the ethics, governance, and privacy requirements of data custodians, clinicians and patients.

BioGrid’s infrastructure and unified governance processes enable the connection of primary care data from two primary care databases, hospital data from hospital admissions, emergency department presentations and outpatient care.

Using data science to improve understanding of cancer treatment and outcomes

The VCCC Data Connect team is comprised of GPs, data scientists, biostatisticians, data analysts and governance experts to help researchers transform the data from the platform into real world clinical practice.

VCCC Data Connect holds data from more than three million unique patients across Victoria, from over 200 general practices. Among other information it includes information on prescriptions and pathology results, hospital data and cancer diagnosis data, and represents seventy two million encounters by patients with the health care system.

To ensure patient concerns are taken into account, the VCCC Alliance Cancer Consumer Advisory Committee (CCAC) is actively involved with the Data Connect project, ensuring the work is grounded in a patient-centric philosophy, and assists researchers, clinicians and educators to better understand and tap into the lived experience of cancer.

Creating real world benefit for cancer patients

A number of projects are already under way using VCCC Data Connect data. These include:

• Understanding diagnostic delays for colorectal cancer (Allison Drosdowsky);
• Understanding diagnostic delays for lung cancer (Dr Jianrong Zhang);
• Risk stratification of patients who present to their GP with Unexpected Weight Loss (Dr Alex Lee);
• Implementation of risk prediction algorithms into practice through the Future Health Today decision support tool (Dr Javiera Martinez Gutierrez);
• Examining patterns of test ordering by general practitioners for different risk thresholds (Dr Brent Venning);
• Early detection of cancer using some commonly ordered blood tests (Dr Meena Rafiq).

These studies can only be done through the use of large-scale linked data, with primary care datasets playing a key role. VCCC Data Connect is the key enabler of this work.