Last Updated May 2026
PLATIPUS is hosted at The University of Melbourne.
The University of Melbourne respects the privacy of anyone who interacts with us and is committed to protecting and managing personal information fairly and lawfully.
This statement provides general information about how we collect and process personal information. It should be read in conjunction with our Privacy Policy and other statements on our Privacy webpage. Specific privacy collection notices provided to you at the time your personal information is collected further detail how your personal information will be processed.
Source: The University of Melbourne, 2026.
PLATIPUS recognises that health data is a treasured gift and is committed to upholding the rights of Indigenous peoples in Aotearoa New Zealand and Australia.
PLATIPUS’ approach is guided by
FAIR Principles for scientific data management and stewardship.
CARE Principles for Indigenous Data Governance.
Te Tiriti o Waitangi and Te Mana Raraunga Māori Data Sovereignty Principles
Maiam Nayri Wingara Principles
SESLHD Healthy Mob, Strong Community. Aboriginal Health Plan 2024–2026 principles
Authority & Control
Participants retain ownership of their data. You may withdraw at any time, request deletion (except where retention is required for safety or legal reasons), and will be informed of any changes to data storage or use.
Indigenous Health Committees (Māori, Aboriginal, and Torres Strait Islander) provide cultural governance and review decisions about data use.
Relationships & Context
Data relates to you, your whānau, and community. It will be stored securely in Aotearoa and Australia and used only for approved research purposes.
Any future use will require cultural review and approval by Indigenous Health Committees.
Collective Benefit
Research aims to improve health outcomes for Māori and Aboriginal and Torres Strait Islander families.
Findings will be shared in accessible formats and published using strength-based language, avoiding deficit framing.
Reciprocity & Respect
Your consent will be sought for all data uses, including optional future research.
You will receive a summary of trial results unless you choose not to.
Cultural protocols (e.g., Karakia, Acknowledgement of Country) will be integrated where practicable.
Guardianship & Ethics
Data will be managed under strict ethical and cultural protocols.
Indigenous Health Committees will oversee governance and ensure cultural safety.
Data sovereignty principles will guide cultural safety training, site engagement, and contribute to the assessment of research that meets Māori, Aboriginal, and Torres Strait Islander health priorities.
Additional Information
If you identify as Māori or Aboriginal and Torres Strait Islander, we may ask for:
Iwi affiliation (NZ) or Community/Country affiliation (AU)
Main language spoken at home
These details are optional but help ensure Indigenous data is accurately represented in research.
Data Storage
Health and trial data: Stored and used in a de-identified manner within secure databases hosted in Australia (AWS Sydney). This is consistent with NZ health data practices.
Contact details: Stored locally in the country of collection and not shared internationally. In Australia, these details will be stored at The University of Melbourne; in Aotearoa New Zealand, at the University of Auckland.
Data Storage
Any request to use your data beyond this study will require cultural review and approval by Māori and Aboriginal and Torres Strait Islander representatives.
Your contact details will NOT be shared.
Shared datasets will not include information that identifies any person.
Regional Management Committees, Māori and Aboriginal and Torres Strait Islander leadership and governance team members will oversee and ensure PLATIPUS adheres to this statement.
A de-identified data set collected for the analysis of domains within PLATIPUS will be made available, once the unblinding of data no longer compromises the integrity of the platform and/or other domains.
The following conditions must be met before data can be shared:
1. All domains in which the participant is co-enrolled are closed to recruitment*
2. Primary domain conclusions/analyses have been published, AND
3. The two-year follow-up of participants within the domain/s of interest is/are complete.
This is estimated to be approximately six months following the completion of the two-year follow-up of domain participants.
Supporting materials including the Core Protocol and Domain-Specific Appendices, data dictionaries and the domain-specific statistical analysis plan, authorship policy, data management plan, statistical implementation guide, statistical appendix, any other appendices and/or any sub-study protocols will also be available. Data may be requested from the University of Melbourne, by emailing info@platipustrial.org. Data access requests will be subject to PLATIPUS sub-committee (including the Lived Experience and Indigenous Health Committees) review and may include communication between parties prior to approval. The Pregnancy Domains OR Neonatal Domains Committee will undertake initial review, followed by the Trial Management Committee, Lived Experience Committee and Indigenous Health Committee. The Statistical Advisory Committee may also be asked to review the request prior to its forwarding to the PLATIPUS Trial Steering Committee for approval. The PLATIPUS Trial Steering Committee will approve/disapprove the data request. Data will not be released until a Data Transfer Agreement and Authorship Agreement has been signed by relevant parties and evidence of ethical approval for the requested purpose has been received. The provision of data may incur a fee.
*Where one or more domains in which a participant is co-enrolled are not yet closed to recruitment, the participant’s data may be provided, without the treatment code of the unfinished domain, to prevent unblinding in unfinished domains.
A Privacy Impact Assessment (PIA) of the PLATIPUS project and proposed data flow was conducted by The University of Melbourne Privacy, Cybersecurity and Records teams to identify potential privacy risks, evaluate their impact, and recommend mitigation strategies.
PLATIPUS was assigned a LOW-risk rating by the records and privacy teams and a low residual risk rating by the cybersecurity team, pending the implementation of the recommended cybersecurity controls, all of which have been applied.
