For researchers and external agencies

Information for researchers and external agencies about how they can request National Cervical Screening Program data from the National Cancer Screening Register for research and evaluation purposes.

Page last updated: 11 February 2019

National Cancer Screening Register (NCSR) Data Access and Release Policy

The information on this page provides researchers with an awareness and understanding of the Department of Health’s (the Department) NCSR Data Access and Release Policy (the Policy).

Implementation of the NCSR Data Access and Release Policy will support the research community by facilitating greater use of available Commonwealth health information to support research that delivers better health outcomes for all Australians. The Policy and its supporting principles are described below.

National Cancer Screening Register Data Access and Release Policy (PDF 240 KB)
National Cancer Screening Register Data Access and Release Policy (Word 292 KB)

Policy Statement

The Policy adopts the Department’s Data Governance and Release Framework (the Framework) for data access and release. The aim of the Framework is to enable greatest possible use of the Department’s data while ensuring privacy and confidentiality are preserved1, and to ensure consistent decisions are made regarding data access requests.

The National Cancer Screening Register Act 2016 (the NCSR Act) provides that a purpose of the NCSR is to facilitate research relating to healthcare, screening, cervical cancer or bowel cancer (once transitioned to the NCSR) in recognition of the importance of data being made available for the purposes of research that benefits the community.

The NCSR Act authorises an officer of the Commonwealth to disclose personal information for the purposes of research where it is of a kind that is approved by the Guidelines Under Section 95 of the Privacy Act 1988 and the Guidelines Under Section 95A of the Privacy Act 1988 (collectively the Guidelines under Section 95 and Section 95A of the Privacy Act) and only if the disclosure is in accordance with those Guidelines (sub-section 17(5) of the NCSR Act).

Scope

The scope of the Department’s Policy is data held in the National Cancer Screening Register (NCSR). It outlines the application of the Department’s Policy to data held in the NCSR.

The Policy is intended for researchers and external agencies. Researchers are people working for institutions and universities undertaking research where that research will benefit the health of the wider Australian community. External agencies are entities wishing to access NCSR data for research and evaluation purposes.

The Policy does not apply to:
  • data used for administering the operations of the NCSR, National Cervical Screening Program (NCSP) or the National Bowel Cancer Screening Program (NBCSP) (once transitioned to the NCSR), such as human resources data or financial data;
  • outputs of data analytics by the NCSR, i.e. ad hoc requests;
  • media requests - these should be made through the Department’s Media Unit at news@health.gov.au; and
  • requests under the Freedom of Information Act 1982 (Cwth) (FOI) – these should be made through the Department’s FOI Unit. More information about making an FOI request can be found at the Department’s FOI page.

Purpose

The purpose of the Policy is to outline the principles that underpin access to and release of NCSR data for research activities and to ensure accountability and consistency in the provision of access to data.

Data Access and Release Principles

Principle 1

Data will be managed as an asset
  • Data held in the NCSR is a national asset and the Department is the custodian of all data. As the data custodian, the Department will have control over information in the NCSR, especially with respect to protection of identified/identifiable and re-identifiable data. This includes establishing adequate controls over the use and disclosure of data when permitting the release of personal information for research purposes and retaining continued accountability for ensuring these controls are maintained at all times.

Principle 2

Personal information must be protected
  • The privacy of citizens is of paramount importance. Personal information cannot be used or disclosed unless agreed by the individual to whom the information relates, or if the information is being disclosed back to the person from whom the information was obtained, or if the use or disclosure is otherwise authorised under the NCSR Act or the Privacy Act.
  • Where a decision is made to release high risk data, the Department will consider whether only elements of data relevant and essential to meet the purpose of a reasonable research request should be made accessible. In agreeing to release high risk data, the Department will develop and implement a legally binding agreement with the recipient of data. The agreement will require researchers to agree to specific terms and conditions for receiving data, specifically that data is used only for the purpose for which it was released.
  • High risk data must not be published in a format that may potentially identify an individual and must not be used for secondary purposes unless agreed by the individual or required or authorised under legislation

Principle 3

Research must have a public benefit
  • The research request must have a public benefit that can reasonably be expected to support improvement of the health or wellbeing of Australians in relation to cervical screening, cervical cancer, or bowel screening or bowel cancer (once the NBCSP has transitioned to the NCSR).

Principle 4

Research must be ethical
  • Research must consider the moral and ethical factors surrounding the access and use of data. Research involving data on Indigenous participants must comply with the National Statement, Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research (NHMRC 2003) and the principles of use, storage and access as outlined in the Guidelines for Ethical Research in Australian Indigenous Studies (Australian Institute of Aboriginal and Torres Strait Islander Studies 2002) specifically in regard to respect for and valuing of cultural and language diversity.

Principle 5

Research must be consistent with applicable legislation
  • In striking a balance between the benefits of research to the community and the legal obligation to protect personal privacy, the Department must ensure that the access, release and use of data complies with the NCSR Act and the Privacy Act, including the Guidelines under Sections 95 and 95A of the Privacy Act.

Requesting data

To enquire about requesting National Cervical Screening Program data from the NCSR please email ncsr.data.request@health.gov.au.

1. Data access, release and use must comply with regulations and legislation including but not limited to privacy, secrecy, consent, commercial-in-confidence, contractual, and freedom of information covered in for example the: Health Insurance Act 1973; Privacy Act 1988; Freedom of Information Act 1982; National Cancer Screening Act 2016; agency memoranda of understandings; and the National Statement on Ethical Conduct in Human Research 2007 (Updated May 2015).



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