Voluntary Indigenous Identifier Framework

Between November 2020 and January 2021, the Department of Health sought feedback on the The Framework for the Collection, Release, Use and Publication of Voluntary Indigenous Identifier Data (VII Data Framework). Specifically, the Department asked:

1. Does the VII Data Framework clearly set out the legal and ethical obligations for data users?
2. What suggestions do you have on how the Department should communicate the legal and ethical obligations to data users?
3. Does the VII Data Framework sufficiently protect Medicare estimations and enrolment data?
4. What suggestions do you have on how VII data should be used?
5. Is the Five Safes Framework an appropriate way to assess data requests?
6. What else should be considered when assessing a request for VII data?
7. How would you assess the types of statistical data tables that can be released to data users?
8. Please include any other comments about the VII Data Framework below

Seven organisations and four individuals responded to the consultation including, Aboriginal and Torres Strait Islander health authorities, doctor peak organisations, a nurses’ and mid-wives’ group and government agencies. Most respondents were satisfied with the VII Data Framework’s  legal and ethical obligations, protections for Medicare and enrolment data, and access and release arrangements.

Specific feedback on the VII Data Framework include:

1. Aboriginal and Torres Strait Islander Data Sovereignty Principles need to be strengthened.
2. It should include a supplement that further clarifies a user’s legal and ethical obligations.
3. It should include a metadata document detailing technical information about the VII variables.
4. It should provide further details on what the VII can and can’t be used for.
5. Endorsement of the use of VII data in linkage or integration projects, provided an Accredited Integrating Authority conducted the linkage and all other restrictions on VII data are met (i.e. data can only be used for statistical purposes, and not to identify individuals, and must be used for health-related research and policy development).
6. Requests for VII unit record data should have approval from a Human Research Ethics Committee with expertise in evaluating Aboriginal and Torres Strait Islander research projects.
7. Action should be taken to improve VII coverage including via data linkage and communication with Aboriginal and Torres Strait Islander communities.
8. Priority access should be available for planning and policy development.
9. VII data should be released at lower levels of geographic aggregation.

The Department appreciates all the feedback and thanks all respondents.

The Department has considered all responses, and these will be used to inform updates to the VII Data Framework.

1. While some information on this will be added to the VII Data Framework, Indigenous Data Sovereignty is a broader issue that the Department will address in the context of the National Agreement on Closing the Gap and in collaboration with the National Indigenous Australians Agency.
2. Additional information on legal and ethical obligations will be added to the VII Data Framework.
3. A metadata document will be included in the appendix of the VII Data Framework .
4. The VII Data Framework will include more detail on appropriate use of VII data, as well as specifying prohibited uses (e.g. to identify or target individuals).
5. Information on the circumstances guiding linkage of VII data will be included in the Framework.
6. The VII Data Framework will specify that requests for unit record data for a research project must be accompanied by approval from a Human Research Ethics Committee with expertise in evaluating research including Aboriginal and Torres Strait Islander people.
7. There are currently no plans for a broad-based communications strategy, but the Department notes the work of ACCHS in this space which has supported growth in VII enrolment of 3,000 new enrolments per month on average over the last ten years.
8. While prioritising access by particular users is not currently planned, the Department continuously reviews and refines the data release process to better meet the needs of users and stakeholders.
9. Currently, MBS estimates that use the VII are available at the State/Territory, Remoteness Area and PHN levels. Lower levels of aggregation will become available as coverage increases.