Victorian Cancer Registry

Accessing and requesting data

We release data on a non-exclusive basis and encourage the use of data for appropriate research relevant to any aspect of cancer control. Data is released for projects that meet appropriate standards of scientific merit and public health importance. Requests for data must be approved by the VCR Director and must comply with relevant legislation.

We will release the least sensitive level of data to fulfil the uses identified in the research proposal submitted with the Data Access Form.

There is typically a cost to accessing data which is calculated based on a cost recovery model. You can find out more about data access costs.

Request data

Accessing your own cancer information 

Anyone can access any information about themselves held on the register and may request to correct incorrect information or add missing information. Typically, there is no cost in accessing your own information and you don’t need to give any reasons why you want to access your own information.

If you would like to access your own information, you will need to complete a Request for Documents form (.doc) or contact the VCR on vcr@cancervic.org.au so we can discuss and assist you with your request.

Accessing data for research purposes

Data may be provided in either an aggregate format (which is considered non-identifiable) or as individually identifiable or re-identifiable unit record level data (either on the level of a patient, tumour or notification).

  1. Non-identifiable data: The National Statement on Ethical Conduct in Human Research defines non-identifiable data as "data which have never been labelled with individual identifiers or from which identifiers have been permanently removed, and by means of which no specific individual can be identified. A subset of non-identifiable data are those that can be linked with other data so it can be known that they are about the same data subject, although the person’s identity remains unknown."
  2. Individually identifiable or re-identifiable data. The National Statement on Ethical Conduct in Human Research definitions are as follows:
    1. individually identifiable data: where the identity of a specific individual can reasonably be ascertained. Examples of identifiers include the individual’s name, image, date of birth or address.
    2. re-identifiable data: where data from which identifiers have been removed and replaced by a code, but it remains possible to re-identify a specific individual by, for example, using the code or linking different data sets.

If you are unsure whether you are requesting identifiable, re-identifiable or aggregate data and therefore whether it needs ethic approval, please check with your ethics committee first.

Accessing aggregate (non-identifiable) information

We provide reports which are publicly accessible. You may access non-identifiable data through the following approaches:

There are no restrictions on access to aggregate (non-identifiable) data. If it's not available through the publicly available sources listed above, you'll need to complete our  Data Access Form. Depending on the complexity and size of the request, there may be a cost involved which we will discuss with you.

Accessing identifiable or re-identifiable information

We will only release identifiable or re-identifiable case records for research purposes with the approval of a  Human Research Ethics Committee recognised by the National Health and Medical Research Council (NHMRC) and the VCR Director.  Requests for access to our data must comply with the National Statement on Ethical Conduct in Human Research 2007. 

The Data Access Form provides a list of all data fields available for us to release.  

Identified information (containing patient’s names and other details) is made available to the following agencies and groups:

  • The health institution which originally provided it to the VCR.
  • The Australian Institute of Health and Welfare (AIHW) for compiling national cancer figures. 
  • Family Cancer Centres to assess the risk of cancer to a person by verifying cancers in their family.
  • The Department of Health and Human Services.
  • Researchers, with the authority of a recognised ethics committee and approval of the Director, Victorian Cancer Registry.

Requests for data

Requests for data should be made via our Data Access Form.

Request data

 

If you'd like to know more, you can speak to us directly.

Contact us