Accessing data
Before seeking access to BreastScreen Victoria data it is important that you review the information below. Once you have read the information you can submit a contact form and we will put you in touch with the relevant staff member.
BreastScreen Victoria is committed to maintaining the privacy and confidentiality of our client data and ensuring it is only used for ethical research.
BreastScreen Victoria will only use and disclose information in line with its published privacy policy. All research projects are reviewed by BreastScreen Victoria’s Research Advisory Committee. Data released for research is de-identified and will only be released following approval from a Human Research Ethics Committee (HREC) of an appropriate institution. Identified data is only released with explicit client consent and in accordance with ethics approval.
BreastScreen Victoria only supports research that is in the public interest, improves the screening program, or breast cancer diagnosis and treatment.
Research must be in accordance with BreastScreen Victoria’s Research Framework. Applications are considered against the Research Framework principles and priorities.
Principles
- Client first: When supporting research, we always put our clients first. We consider what is most important to our clients and work to achieve the best outcomes for the community. We support research where consumers are involved in the whole research process, from the initial stages to the interpretation of results.
- Equity and inclusion: We believe that research must actively address disparity and involve priority groups or communities, including Aboriginal and Torres Strait Islander, culturally and linguistically diverse, LGBTIQ+, rural and regional, socio-economic disadvantaged and people with disability.
- Translation: We aim to support research that has a clear pathway to translating research findings into policy and service delivery. This process includes communicating any relevant changes with consumers.
- Impact: We carefully consider the impact of research projects on our program and its operations, as well as on clients, the community and the broader health system. Some considerations include population health outcomes, cost-effectiveness, workforce and service impacts. We also avoid duplicating existing or ongoing research.
- Collaboration and co-design: We expect that researchers will work closely with BSV services and clients on any research projects that may impact on them. This process involves close collaboration, consultation and co-design with affected groups. Further, research impacting Aboriginal communities should be self-determined, Aboriginal-led and culturally appropriate.
Research priorities
- Understanding and reducing breast cancer risk: Primary prevention is the best chance to alter long-term trends in incidence and mortality.
- Social, cultural and behavioral factors that influence participation: The state-wide breast cancer screening participation rate is currently at 49.5% of the eligible population (2020-2022 BSV program data). This figure is lower in some priority population groups, including Aboriginal and Torres Strait Islanders, culturally and linguistically diverse, LGBTIQ+, rural and regional, socio[1]economic disadvantaged and people with disability. Improving social, cultural and behavioural factors such as client experience, cultural safety, community engagement and health literacy will strengthen our program. They will help us to meet client needs and achieve equitable screening participation rates and cancer outcomes.
- Risk- based breast cancer screening: Interest in a risk-based, personalised approach to breast cancer screening in Australia is increasing. This interest is driven by a growing body of evidence on breast cancer risk assessment and risk-based management, new imaging technologies, Artificial Intelligence (AI), genomics and community awareness about breast cancer risk factors such as breast density. Projects such as the Roadmap for Optimising Screening in Australia – Breast (ROSA) are starting to provide direction on the most appropriate changes we can make to our program.
- Breast cancer diagnostic assessment: Assessment and diagnosis after a breast screen (mammogram) that shows signs of cancer is a critical step in the screening pathway. We operate Reading and Assessment Services that deliver this crucial service across the state. There are always opportunities to improve the assessment and diagnosis process. Some examples include enhanced biopsy and imaging techniques and the management of ‘borderline lesions’ detected during breast screening.
- Improving Aboriginal and Torres Strait Islander women’s health: Breast cancer disproportionately affects Aboriginal and Torres Strait Islander Victorians. Evolving breast cancer screening services to better meet the needs of our Aboriginal communities is one of our priorities; this includes improving access, enhancing cultural safety and increasing screening participation rates.
Lifepool
Researchers are encouraged to explore access to the Lifepool cohort before contacting BreastScreen Victoria. Further information is available on the Lifepool website.
Overview
Request for access to information held by BreastScreen Victoria will go through the following process:
- Expression of interest
- Review
- Documentation sign-off
Detailed information is provided below.
Expression of interest
Use the contact form to register your project. You will be provided with the name of a BreastScreen Victoria key contact who can answer any questions you have about our research assessment process.
The data available in the program is outlined in the BreastScreen Australia (BSA) data dictionary. Researchers should review the data dictionary to ensure the information they are requesting is held by BreastScreen Victoria. The data dictionary can also help define data requests.
Information on the research approval process
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Following approval by the Research Advisory Committee researchers will be provided with a time estimate based on the complexity of the data request and number of projects in the queue.
Documentation sign off
If your research project is approved, researchers will:
- Receive a revised cost estimate from BreastScreen Victoria for providing the data. BreastScreen Victoria releases information for research purposes on a cost recovery basis. Researchers are responsible for ensuring the costs are incorporated into their research budget and formally accept the cost estimate (see below)
- Need to provide details of funding or ethics approval that were not finalised at the time of application
- Be required to complete a Data Access Deed (see below)
- Provide a Multi Institutional Agreement where applicable
- Provide any additional information as requested
Research projects must not have an adverse impact on Program operations, resources, or system infrastructure. We reserve the right at our discretion to adjust assigned research support resources if they are required for service delivery activities.
Ethical considerations
BreastScreen Victoria is committed to maintaining the privacy and confidentiality of our client data and ensuring it is only used for ethical research.
The BreastScreen Victoria Research Advisory Committee does not provide ethics approval. Where required, projects must obtain ethics approval from the Human Research Ethics Committee (HREC) of an appropriate institution. Where support from BreastScreen Victoria is required before ethics approval can be obtained, we may be able to provide conditional, in-principle approval.
Cost recovery and fair return on investment
We release data and images for research on a cost-recovery basis. This data includes human resources, infrastructure, consumables, system development, support, maintenance and licence costs. We do not profit from provision under this model. However, should the research activity be commercialised, we maintain the right to consider a fair return on investment where appropriate.
Estimated costs will be provided to researchers to support project approval processes including contractual, organisational, and/or ethical.
Arrangements for cost recovery will be agreed with the requestor prior to any work commencing. BreastScreen Victoria will advise researchers of any changes to the approved cost estimate.
Cost recovery may not be applied to routine access to data, or where BreastScreen Victoria deems it is in the public interest to release.
Data Access Deed
If your research project requires access to BreastScreen Victoria's data, it is important you familiarise yourself with our Data Access Deed. In particular, ensuring the data request is submitted in the format as per schedule 1 on the Deed. Pre-planning of completing this section will enable timely and accurate response in providing the relevant data.
Where the provided data will be used for a commercial product or to develop software, we may require researchers to sign an alternative version of this agreement to enable BreastScreen Victoria access to the product or software once the research/development is complete.
Reporting requirements for endorsed research projects
Once your project is endorsed and the data has been released, BreastScreen Victoria requires the following to ensure benefits of improving health outcomes:
- Copies of final reports or publications within three months of project completion.
- Opportunity to review draft publications including conference abstracts prior to publication or presentation, to allow BreastScreen Victoria the opportunity to consider the impact of findings and respond appropriately.
Acknowledgement
All research undertaken in BreastScreen Victoria services and/or using data from the program must acknowledge BreastScreen Victoria in all publications and presentations.