Who do we represent?
The AH&MRC is the peak body representing Aboriginal communities in NSW and works with state and federal governments, researchers and others. We contribute Aboriginal community perspectives into the design, analysis, interpretation and reporting of Aboriginal information, evaluation, Continuous Quality Improvement and research.
What do we do?
We provide advice about and endorse arrangements and structures for Aboriginal community control of Aboriginal health and wellbeing related research and evaluation. We work with those involved in research and evaluations that are state-wide or involve multiple sites in NSW. Endorsement can include providing letters of support for those projects where Aboriginal community advice and support is sought and where there are appropriate Aboriginal Community Governance measures in place.
What is our position on research?
The AH&MRC is committed to strengthening the role of the NSW Aboriginal Community Controlled Health sector in research and evaluation. We are bound by the NHMRC National Statement, AH&MRC Ethical Guidelines, the AH&MRC Constitution and the NSW Health Information Guidelines to guide our involvement in and assessment of research and evaluation.
”Aboriginal people have... rights and responsibilities of ownership regarding their health and health-related information. This includes the right to protect and care for the use of this information, the right to determine culturally appropriate forms for its reporting, and the right to grant or withhold permission from other agencies or organisations for its use...”
When should researchers contact us?
Researchers should contact the AH&MRC if they are conducting any research which is:
- NSW state or national projects with a NSW component
- data linkage
- multi-site research (particularly if the research may require a letter of support for an application to the AH&MRC Ethics Committee)
We encourage researchers to make contact with us as early as possible in the research process. Researchers conducting projects in specific geographical areas should contact the local Aboriginal Community Controlled Health Services where they intend carrying out the research. An AH&MRC letter of support is not a substitute for local ACCHSs letters of support.
What is the process for determining whether the AH&MRC supports a research project?
The AH&MRC is generally supportive of research with strong Aboriginal community governance aimed at improving the lives of Aboriginal people, that espouses better planning and delivery of services.
Requests for AH&MRC advice on, support for, or participation in research and evaluation, are considered and decided by the AH&MRC CEO on behalf of the AH&MRC Board. Decisions about whether the AH&MRC will support a particular research or evaluation project are made by considering the following criteria:
- The potential for the project to benefit NSW Aboriginal communities.
- Whether any issues with the methodology identified during the AH&MRC Research Support review process have been addressed.
- Whether there are appropriate structures in place to deliver Aboriginal Community Governance for the project.
The Research Support Officer is the point of contact with researchers during the review and assessment process. Please email the Research Support Officer the draft proposal or protocol to beginning the engagement process. Also outline what you are requesting e. g.committee representation, letter of support or advice. If the proposal does not outline the above criteria please address those in the email. The Research Support Officer will then be able to advise on the next steps.
This process can take some time so researchers are encouraged to seek the AH&MRC input at the design phase of the project.
What is Aboriginal ‘control’?
The term control essentially means that at all stages of the research, Aboriginal people and communities participating in, or directly affected by the research will be fully informed about, and agree with, the purposes and conduct of the project. It goes beyond either involvement or consultation, and requires an acknowledgment that Aboriginal people have the right to make decisions about research affecting them. However, the way in which control will be implemented will vary between projects.
The specific processes and mechanisms by which control is achieved will vary with each project following negotiation and formal agreement by the local communities.
How should you ensure there is Aboriginal control and governance?
As a first step, researchers should seek the active involvement and support of local ACCHSs, as the Aboriginal community-based body with expertise and experience. A community perspective is essential for appropriate and useful research. Where the project is state or national a letter of support can be sought from the AH&MRC.
Approval from Aboriginal people employed by government departments is not a substitute for consultation and negotiation with community agencies.
Where research is being conducted in a community where no ACCHS operate or the ACCHS is unable to participate in the research, the required support may be obtained from an alternative appropriate Aboriginal organisation. An alternative organisation must be one that ensures the research is subject to Aboriginal community control from a body that has experience and expertise in health and/or the subject being studied. This could include an Aboriginal Land Council or an Elders group.
Setting up Aboriginal Community Governance for research involves organising mechanisms to strengthen decision-making and control by Aboriginal people over research planning, design, implementation and interpretation of findings. Sound Aboriginal Community Governance models maximise input by the relevant Aboriginal community representatives and build on peoples skills to work towards ensuring research is beneficial for Aboriginal communities.
Aboriginal governance should include:
- Aboriginal Advisory group
- Aboriginal researchers (CIs or AIs)
- Aboriginal research assistants
- Aboriginal capacity building opportunities
AH&MRC Research Support and AH&MRC Ethics Committee relationship
The AH&MRC is a separate entity from the AH&MRC Ethics Committee and are process are completely separate. It is important that as the NSW ACCHSs representative body that we are engaged in research projects that have implications of NSW Aboriginal people.
AH&MRC support of and participation in research and evaluation projects is always contingent on researchers making an application to the AH&MRC Ethics Committee and receiving a letter of approval. Researchers should make contact with the AH&MRC Ethics Committee to determine whether an application to the Committee is required. See the Ethics Committee page for more information.
For more information on the AH&MRC Ethics Committee please see the AH&MRC Ethics Page.