Project proposal assessment
NHDH project proposals are assessed for approval against the NHDH Governance Protocols. Assessment of a project is undertaken by the AIHW NHDH data custodian, the AIHW Ethics Committee Secretariat and the NHDH Advisory Committee.
Data custodians who do not participate on the NHDH Advisory Committee, however, who endorse the inclusion of their data in the NHDH provide their approval and content advice via a federated approach. Such examples include the Department of Veterans Affairs and the use of Repatriation Pharmaceutical Benefits Scheme (RPBS) data, Australian and New Zealand Intensive Care Society and the use of intensive care data, and Child Protection data, Youth Justice data and Australian Early Development Census data which is governed via the Child Wellbeing Data Asset National Committee.
A number of issues may trigger a project to be further scrutinised and not be approved or additional context or amendments may be sought from the Project lead. These include but are not limited to, projects that produce state and territory outputs for comparison and compliance reporting.
Projects that suggest state and territories will be ranked, benchmarked, or measured against each other based on data available within NHDH will not be approved. However, it is possible to release state and territory level data from NHDH to better understand the variations, impacts and benefits of different model of care. Public reports must not name any jurisdiction without seeking approval prior to release.
Project proposals need to describe how the project will satisfy the AIHW’s requirements for community expectations as detailed in the project proposal template. Project proposals should explain the engagement and consultation activities undertaken by the project team, including working groups and advisory groups that inform the project team during the life of the project. Project proposals should explain the engagement and consultation activities undertaken by the project team, including working groups and advisory groups that inform the project team during the life of the project.
All project work is thoroughly described in the project proposal and should be ready to commence immediately upon project approval. Unspecified project activity/analysis and future work plans will not be approved.
Project proposals should address how external advice from expert First Nations people is being sought and how appropriate consultation and oversight is provided during the life of the project.
A First Nations focussed project requires the following approvals and oversight:
- Approval from First Nations people Human Research Ethics Committee (HREC). Researchers undertaking First Nations focussed projects are required to obtain ethical approval from all applicable HRECs corresponding to the jurisdiction to which the project’s requested data relates. The relevant Indigenous-related HRECs are:
| State / Territory | Relevant Human Research Ethics Committee (HREC) |
|---|---|
| New South Wales | Aboriginal Health & Medical Research Council of NSW |
| South Australia | Aboriginal Health Research Ethics Committee |
| Western Australia | Western Australian Aboriginal Health Ethics Committee |
| Victoria | Victorian Aboriginal and Torres Strait Islander Human Research Ethics Committee |
| Northern Territory | NT Health and Menzies School of Health Research Human Research Ethics Committee |
| Tasmania | University of Tasmania Human Research Ethics Committee |
- The project leader will need to ensure that any conditions arising from the HREC approval are complied with.
- A letter of support detailing the planned consultation, engagement and oversight of the project from a First Nations representative.
- Approval from the Group Head responsible for the AIHW First Nations Health and Welfare Group. The HREC approval and letter of support should be provided to this AIHW Group Head as evidence that the project involves collaboration with First Nations people.
An alternative consultation approach, such as the formation of a First Nations advisory committee, can be considered by the Group Head responsible for the AIHW First Nations Health and Welfare Group on a case-by-case basis.
In assessing whether a project has an ‘First Nations people focus’, regard should be given to ‘What is Aboriginal and Torres Strait Islander research?’, in (page 6) of the AIATSIS Code of Ethics for Aboriginal and Torres Strait Islander Research [PDF 2MB].
Additional approval is required from the Department of Veterans’ affairs (DVA) for projects that use RPBS data with the intention to analyse the serving defence and DVA client population. Project proposals benefit from clearly describing how RPBS data will be used, and whether the RPBS data is being reported separately to PBS data or combined with PBS data for an overall picture of medications dispensed to the Australian population.
As part of access to NHDH, project leaders sign a conditions of use agreement including a retention and document destruction agreement. As such, each project proposal should have a clear completion date. Projects that describe repeating analysis with future years of data will be asked to clarify the project end date. Project extensions can be sought and approved if needed.
NHDH use case: approved project example
Proposed project aim: to use linked data to explore the outcomes of patient journey of hospitalised hip fracture patients. Analysis aims to explore patient journeys and outcomes at the state/territory level, which will not be used for performance or compliance reporting. Analysis will also be undertaken by remoteness areas, age groups and sex.
Datasets requested for linkage: hospitals data (ED, Admitted Care), MBS, PBS, Aged Care.
Assessment considerations: the project will deliver a public good in the form of improved outcomes for patients with hip fracture. The research topic is in line with permissible use of NHDH regarding informing government health service planning, monitoring and evaluation and health policy development.
Outcome of assessment: the project proposal was approved.
NHDH use case: rejected project example
Proposed project aim: to use linked data to identify patterns of fraudulent or excessive use of the health system by practitioners and consumers.
Datasets requested for linkage: hospitals data (ED, Admitted Care), MBS and PBS
Assessment considerations: the project was assessed as not meeting the public good criterion. Although there is no overt intent to identify individuals or population sub-groups and purports to improve effectiveness of health systems, the proposed research was considered to be primarily for administrative and compliance purposes, which is not a permissible use under the NHDH governance protocols.
Outcome of assessment: the project proposal was rejected.