Applications have been prepared and submitted to the three ethics committees relevant to this initiative. A staged approach to obtaining ethics approval has been required in order to accommodate the varying submission periods and meeting dates. This extended the time needed to gain ethics approval, but did ensure WAAHIEC and DOHWA HREC advice formed the basis of the protocol and subsequent Curtin HREC application, as is appropriate to the nature and scope of the project.
- WAAHIEC: Preliminary approval (217 - 08/08) was received from WAAHIEC on 25 August 2008. Final approval is subject to receipt of letters of support from the Aboriginal communities in the health district under consideration.
- DOHWA HREC: Written advice (EC 2008/20) received from the Executive Officer Human Research Ethics Committee (DOHWA HREC), on behalf of the Deputy Chair, indicated that approval was not required for Stage One of this initiative as it did not involve access to DOHWA data (Appendix C). An application will be submitted later if the decision is taken to move beyond a descriptive epidemiological MDS (minimal data set) to actual data linkage in Stage Two.
- CHREC: A twelve months approval period was received from the CHREC on 17 November 2008. The approval (150/2008) was not subject to any requests for clarification (Appendix D).
Terms of Reference
The Project Steering Group Terms of Reference are underpinned by the National Health and Medical Research Council (NHMRC) Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research and the Consumers Health Forum's Model Framework for Consumer and Community Participation in Health and Medical Research (NHMRC, 2004).
The role of the Project Steering Group is to provide comment and advice on:
- The engagement of relevant Indigenous and mainstream service providers in the research process;
- The relationship between the Project, cultural, spiritual and social values with respect for the richness and integrity of the cultural inheritance of Indigenous people;
- The engagement of Indigenous people in the consultation process;
- The dissemination of relevant project information through service networks and channels for feedback of data;
- The methodology, conduct, dissemination of results and potential outcomes of the Project;
- Project documents such as consent forms and participant information sheets, interview guides, questionnaires and health promotion resources;
- The Final Report and draft manuscripts before they are published in scientific journals;
- The preparation and development of summaries for the community for dissemination;
- The storage of data and the protection of individual and/or community identities after the Project's completion.
The roles and responsibilities of the Project Team closely align with those articulated by the Curtin University of Technology project management framework:
- Project Sponsorship (Chief Investigators)
- Responsible to the Office of Aboriginal Health for the project
- Strategic planning and progress review
- Endorsement of the project plan and planning documentation to confirm project scope and deliverables are correct
- Final approval of substantial methodological changes to project plan
- Accepts project deliverable(s) by completing the Project Sign-off
- Project Manager (CIC, David Vicary)
- Managing the day-to-day operations of the project
- Monitoring and controlling the project plan
- Providing status reports to the Project Sponsors (Chief Investigators) and Project Steering Group
- Ensuring quality checks are undertaken and documented
- Leading the Research Support Team
- Authorising project expenditure in accordance with the project budget, and
- Consulting with the Project Sponsors (Chief Investigators) and Project Steering Group to maintain communications and keep parties up-to-date on progress
- Research Support Team (Project Officer and Project Assistants)
- Undertakes research tasks as assigned
- Reports to the Project Manager and notifies where deviations in methodology, schedule, budget, etc occur
- Attends all project meetings, records notes and provides input where appropriate
- Circulates agenda and meeting notes
The following organisations are represented, or have been invited to participate, on the steering group.
- Centre for Aboriginal Studies, Curtin University of Technology
- Centre for International Health, Curtin University of Technology
- Kulunga Research Network, Institute for Child Health Research
- Derbarl Yerrigan Health Service
- Aboriginal Health Council of WA
- Office of Aboriginal and Torres Strait Islander Health
- Osborne Park GP Network
- Perth Primary Care (TBA)
- Ngala Family Resource Centre
- Department for Communities
- Department for Child Protection
- Office of Aboriginal Health
- Child & Adolescent Health Service
- Child and Adolescent Community Health Policy Unit (Statewide)
- Population Health, North Metropolitan Area Health Service
- Population Health, WA Country Health Service
- Division of Population Sciences, Institute for Child Health Research
- Primary Health Care Research Evaluation and Development General Practice, University of Western Australia
- Strong Women Strong Babies Strong Culture program, St John of God Healthcare
Input from other service providers will also be sought, as advised. Members of the community (or communities) that fall(s) within the geographical scope of the initiative will be invited to participate in the steering group.
The Steering Group shall meet four times a year on the first Tuesday of the month, or at other agreed times.
A minimum of two Indigenous steering group members should be present, or have provided written out-of-session advice on items requiring action by the group to achieve quorum.
Proxies are welcomed when Steering Group members are unable to attend scheduled meetings.
The agenda, with attached meeting papers, will be distributed no later than the Monday before to the next scheduled meeting. All agenda items must be forwarded to the Project Manager/Project Officer by close of business on the Friday before the next scheduled meeting.
Notes and Meeting Papers
Meetings will be digitally recorded and notes for each Steering Group meeting will be prepared and distributed, including attachments, as soon as possible following each meeting. By agreement with the Group, out-of-session decisions will be deemed acceptable. Where agreed, all out-of-session decisions shall be recorded in the notes of the next scheduled Steering Group.
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