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. 

Introduction

BreastScreen Victoria strives to deliver the best possible service and outcomes for its clients. We are committed to facilitating the appropriate use of available data and information for research that will improve health outcomes and aligns to BreastScreen Victoria's Strategic Goals.

Research must be in accordance with BreastScreen Victoria's aims and objectives. Research must be in the public interest, contribute to the effectiveness and quality of service provision or have the potential to lead to a reduction of mortality and morbidity associated with breast cancer.

Lifepool

The Lifepool project is a comprehensive collection of health and lifestyle information, clinical data and biospecimens, broadly defined as ‘data’. Lifepool is funded by the National Breast Cancer Foundation (NBCF) and is part of the NBCF National Research Resource.

Each Lifepool participant has provided informed consent for the use of their data, including BreastScreen Victoria data, for research into breast cancer and other women’s health issues.

Researchers should investigate if their project question can be answered through data available from Lifepool. Only in cases where this is not possible should an application be made to BreastScreen Victoria.

Information for Researchers wishing to access Lifepool 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

Following approval by the Research Assessment Committee researchers should allow up to 2 months to access aggregate data and simple unit record extracts; more complex requests can take up to 4 months to confirm the requirements. Please note this timelines is indicative only and can be impacted by researcher availability and acceptance of quote, timing of research committee meeting and number of requests in the queue.

The Research Assessment Committee meeting dates for 2023 are:

• 16 February
• 18 May
• 17 August
• 16 November

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.

Once above is complete, BreastScreen Victoria will require 4-6 weeks to schedule and begin the works to release the data. 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 Assessment 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

BreastScreen Victoria holds information (data and images) valuable for research. Due to demand for access , requests for information, systems changes, and support changes to undertake research, including publication and presentation, can generally only be supported by BreastScreen Victoria on a cost recovery basis.

Estimated costs will be provided to researchers to support project approval processes including contractual, organisational, and/or ethical. Costing will include consideration to (where applicable) human resources, infrastructure, consumables, and system support maintenance and licencing.

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.

We carefully consider the need for cost recovery for each access to information request.

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 to develop software, we may require researchers to sign an alternative version of this agreement to enable BreastScreen Victoria access to the software once the research/development is complete.

Please submit any questions you have regarding the deed or data available to research@breastscreen.org.au.

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:

• Progress reports on a 6 monthly basis (this will be prompted by BreastScreen Victoria).
• A final report within three months of project completion.
• Opportunity to review published papers and conference abstracts prior to publication or presentation. This is to give 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 the BreastScreen Victoria program in all publications and presentations.