Linking data sets to the NHDH
The AIHW works in partnership with the Data Custodians to support the onboarding of new data collections into the NHDH. There are two options for including new data into the NHDH. Data can be included on an enduring basis as explained below, or on a quarantined project-specific basis as part of our NHDH+n model.
The onboarding of data collections into the NHDH on an enduring basis includes the following steps (figure 1).
Initial engagement, governance/ethics, approvals (figure 2)
The AIHW will meet with the Data Custodian to discuss their specific needs, including timings, costs, feasibility, specific governance requirements and consent arrangements for the data collection. The AIHW will lead this process to develop a data sharing agreement and the required ethics applications.
Data design and acquisition
The AIHW will work closely with the data custodian on establishing the data item list for the NHDH and develop data specifications to transform the data in line with the requirements of the NHDH.
Technical preparation
Following the data being provided to the AIHW from the Data Custodian, AIHW will undertake the technical preparation and develop a linkage plan and test plan.
Data linkage
Once the linkage plan is established the de-identified linkage map will be created.
Data merging and transformation
Transformations will be applied in line with the data specifications and de-identified linked ready data will be transitioned to for testing.
Testing
Data is thoroughly tested to evaluate the quality, accuracy, and completeness of data.
Release
Data is transferred to the production environment for release into the NHDH secure environments for user access. The data collection is now ready for researchers to apply for access to the data via project proposals as per the processes outlined in the NHDH Governance Protocols.
For data custodians who are interested in their data being released in the NHDH, please refer to the Data Custodian Toolkit [Docx 651kB] and contact the team at [email protected].
Please complete the NHDH Data Integration Form [Docx 97kB] and send to [email protected].
Figure 1 Illustrates the process steps for linking a new dataset to the NHDH.
Figure 1: Process for linking dataset to the NHDH on an enduring basis

A seven-part horizontal flowchart with seven boxes and eight circles that highlights the standard operating procedure of an NHDH project. The boxes illustrate the stages of the process, and the teams involved, and the circles describe the steps involved. The first circle begins the cycle and has the words ‘Start’. This is followed by an arrow that leads to the next phase of the process. The following boxes and circles include:
- Box 1: Initial engagement and governance establishment
- Source Data custodian, AIHW Data Custodian, Data Design and Expansion Team
- Circle 2: DSA, ethics approval, project proposal
- Box 2: Data design and acquisition
- Data Design and Expansion Team, ICT Team
- Circle 3: data specification, data obtained by DGIG
- Box 3: Technical preparation
- Data Linkage Team, Testing Team
- Circle 4: linkage plan, test plan
- Box 4: Data Linkage
- Data Linkage Team
- Circle 5: linkage map
- Box 5: Data merging and transformation
- Data Merging Team, ICT Team
- Circle 6: de-identified link ready data ready for testing
- Box 6: Testing
- Testing team
- Circle 7: tested de-identified link ready data ready for production
- Box 7: Release
- Project Management Team
- Circle 8: de-identified data loaded into NHDH
Figure 2: NHDH data agreement steps

A six-part diagram with three boxes on the top and three boxes on the bottom. The top three boxes (1, 2 and 3) flow from left to right and describe the steps involving data agreement sharing, any relevant ethics applications and the NHDH project proposal. The bottom three boxes (4, 5 and 6) flow on from the top middle box (2) and describe the relevant ethics that need to be sought. These boxes provide the process of linking new datasets to the NHDH which include:
- Top left box (1): Data agreement sharing
- Between Data Custodian and AIHW
- Defines key relationships, approved uses, data flow conditions of release
- Top middle box (2): Ethics applications
- (see below 3 steps to be undertaken in parallel)
- Top right box (3): NHDH Project Proposal
- Under NHDH, define the project or program of work in the project proposal.
- Some projects will require a HREC
- Bottom left box (4): New ethics: Establish identifiers collection
- Identify AIHW DC
- This will include return to provider of NDIA (if required)
- Bottom middle box (5): New ethics: Establish content collection
- Identify AIHW DC
- Describe content data being provided to the AIHW
- Describe identifying information being provided to the AIHW
- Bottom right box (6): Amendment to NHDH ethics approval to add Registry
- Data could be included on an enduring basis

