Improving access to and use of data to inform and support cancer research in NSW

Overview

One of the ways the Cancer Institute NSW (the Institute) advances the pace, quantity and quality of population-wide cancer research is through the Enduring Cancer Data Linkage (CanDLe) initiative. Through CanDLe, the Institute facilitates access to linked data from multiple sources, enabling approved researchers to gain a deeper understanding of care patterns, identify risk factors and evaluate treatment outcomes. We collaborate with researchers to tailor data requests, ensuring the collection of high-quality data, while protecting individual privacy.

The initiative provides access to linked data for health services research in NSW and ACT. Researchers can also request unit record data from various collections for specific studies, while summarised data is readily available on the Institute's website.

The Institute promotes best practices in data management, adhering to legal and regulatory requirements to ensure the effective, safe and efficient use of the Institute's datasets.

Evaluation methodology

A mixed-methods evaluation was undertaken, combining quantitative data with insights from researchers and internal stakeholders to build a clear picture of the Institute's initiatives' early effectiveness.

Triangulating findings ensured a well-rounded understanding of what’s working and where there are opportunities to improve. The evaluation also provides a valuable baseline to support future studies.

Key findings

These initiatives have led to meaningful improvements in the availability and use of population health data for research. The extent of this was explored through five key areas: 

Increased availability of linked datasets

During the evaluation period, 2022 to 2024, two major linkages demonstrated substantial growth in data assets, with one experiencing a 257% increase and the other a 400% increase.

Improved research activity

Sustained engagement and growing interest were found with a steady increase in the number of approved research projects using CanDLe datasets.

Expanded dataset scope

Across the linked data, the number of available variables increased. This expansion enabled more in-depth and complex research.

Emerging use for equity research

Linked datasets are being used to explore disparities in cancer outcomes, particularly across Aboriginal, regional, multicultural and older populations. However, some focus groups remain underrepresented.

"We're starting to see, for example, examination of rarer conditions. One study underway, I know, is about male breast cancer, which is hard to study if you are just confined to a single year of data" – external data user.

Faster access to data

Most data requests in 2024 were fulfilled within 30 days, reflecting early success in improving data access and efficiency. This saves researchers time and drives greater translation of research into impact.

“Honestly, I think that this is… quite game changing…that researchers in NSW have rapid access to this kind of large data asset”- external data user

Opportunities

• Developing tools for better long-term outcome measurement.
• Strengthening partnerships across research, health and international sectors to foster knowledge exchange and innovation.
• Ensuring ongoing investment in governance, infrastructure and stakeholder engagement to sustain and expand the cancer data access for research.

What is next

We will continue to support cancer data access for research. Key areas of focus include improving the representation of all priority populations in linked datasets and enhancing support for researchers to translate findings into policy and practice.

These efforts will help ensure that population health data continues to inform high-quality, equity-focused cancer research across NSW.