SA NT DataLink has been established to provide a high quality data linkage service to support research, policy development, service planning and evaluation. SA NT DataLink is a joint venture of the South Australian and Northern Territory governments, the University sector and the community.
In January 2011, the South Australian Northern Territory Data Linkage Consortium contracted the Health Consumers Alliance of South Australia (HCA), the peak body for health consumers in South Australia to establish a Consumer Reference Group (CRG). Applications were sought from individuals interested in research from the perspective of health consumers and/or users of community services and six people were appointed, including two Territorians.
The Consumer Reference Group provides independent advice on issues of consumer and community interest, including:
- consumer and community engagement in research proposals
- the public interest and impact on consumers of proposed data linkage research projects
- consumer perspective on strategic and business plans, policies and procedures, of SA NT Data Link
- procedures for responding to feedback and complaints from consumers and the community
The CRG is chaired by HCA’s Executive Director and meets four times per year. Members receive reimbursement for their time and expenses in line with the SA NT DataLink member’s reimbursement policy.
The CRG has met six times, including once in Darwin. SA NT DataLink and HCA provided induction and training for the CRG members, and HCA provides ongoing support and co-ordination.
The CRG has so far provided advice and consumer perspectives on the following research proposals:
- Estimating the ‘Consequences of Child Abuse & Neglect Using linked data’
- Enhanced reporting on Closing the Gap initiatives
- Department of Education and Children’s Services Early Childhood Development DataLinkage Demonstration Project
- Housing for Health Outcomes Evaluation – Northern Territory (HOUSE_NT)
This work has been informed by the development of a Consumer Reference Group Policy for Research Proposals based on the National Health and Medical Research Council Statement on Consumer and Community Participation in Health and Medical Research. The CRG also considered a practical guide on Consumer and Community Participation in Health and Medical Research published in 2007 Anne McKenzie (WA) and Bec Hanley (UK).
The CRG is of the view that researchers should be aware of the NHMRC Statement and actively engaging with Consumers and the Community throughout the research cycle. These include:
- Deciding What to Research
- Deciding How to Research
- Doing the Research
- Letting people know the results
- Knowing what to research next
The CRG has also advised on business process improvements for the research application process and on an online portal for CRG discussion and input direct to researchers. The CRG is keen to engage with researchers between meetings through moderated online conversations.