Frequently Asked Questions
- What is WAGER?
- Why the need for WAGER?
- What are the benefits of WAGER?
- Have similar projects been done before?
- Who manages the data?
- Who has custody of the data?
- How is data access regulated?
- Who has access to the data?
- How is the project governed?
- How are privacy and confidentiality assured?
1. What is WAGER?
WAGER stands for Western Australian Genetic Epidemiology Resource. WAGER was funded by an NHMRC enabling grant in 2004 to develop enabling infrastructure to facilitate the integration of existing and future disease-specific clinical, epidemiological and genetic resources available in WA with biospecimen banks and with the core WA Data Linkage System. A further aim is to facilitate access to these resources and to provide support infrastructure for the conduct of ongoing and new research studies.
2. Why the need for WAGER?
There is a clear need for a national facility that can provide cost-effective informatics support to the Australian medical research community. There are no equivalent facilities available nationally and there are no viable alternatives for studies that do not have the required funding to purchase commercial solutions or develop their own solutions. Smaller studies are often able to operate using simple tools, such as Microsoft Access or Microsoft Excel, but there is no doubt that the research being undertaken by these studies is being compromised by the lack of suitable informatics support.
3. What are the benefits of WAGER?
The high-end core informatics infrastructure and databases provided by WAGER will lead to dramatic increases in the efficiency of resource utilization and a reduction in duplication of efforts by individual groups. Australian researchers will have the means to enquire which subjects with detailed clinical and epidemiological data, biospecimens and linkages to health information are available for the whole spectrum of human disease at a general population level. Pooling resources through collaboration will also lead to increased statistical power to detect modest environmental and genetic main effects and interactions. Significant new initiatives in teaching, collaboration, and data access opportunities relevant to gene discovery, clinical and genetic epidemiology, new therapies, preventive medicine, and pharmacogenomics will ensue at the national level.
4. Have similar projects been done before?
No other projects in Australia and very few countries internationally have this capacity, which will be responsible for a large number of advances in our consideration of the causes and treatments of complex diseases.
5. Who manages the data?
The collection of disparate research and biospecimen datasets is managed by the WAGER Informatics team at the Western Australian Institute for Medical Research.
6. Who has custody of the data?
The custodianship of the research data hosted on WAGER remains with the original data custodians.
7. How is data access regulated?
The Management and Advisory Committees are established to coordinate access to the biospecimens and epidemiological/research data, and to liaise with other peak access bodies such as the WA Data Linkage Management Committee. WAGER is a national resource, and will therefore be made available in a fair and reasonable manner to all bone fide Australian researchers with appropriate clearance from a properly constituted ethics committee and approval of the WAGER Scientific Advisory Committee.
8. Who has access to the data?
Access to any of the contributing datasets hosted on WAGER requires the approval of each of the data custodians involved. External users are required to enter into negotiations with individual custodians within WAGER for access. This involves defining authorship and cost recovery.
Application for access to the WAGER/DLU resources will follow those already established for the WA Data Linkage Project and WA Cross Jurisdictional Data Linkage Project. All applications will require specific ethics approval and if any sensitive or identifying details are to be included, a separate application to the Confidentiality of Health Information Committee (CHIC) will also be required.
9. How is the project governed?
A supervisory Management Committee and Scientific Advisory Committee for WAGER meet regularly to oversee the development of the facility, to liaise directly with other relevant bodies, to ensure that rigorous ethics, privacy and quality control measures are followed, and to manage requests for data access from the wider Australian research community.
10. How are privacy and confidentiality assured?
Privacy and confidentiality of data is enforced in various ways. Firstly, the WAGER databases made available to researchers do not contain any person-identifiable information. The WAGER research databases and Patient Register are stored, managed and administered separately by different organisations and in different locations. WAGER does not collect new health information about individuals.
Secondly, all WAGER staff sign Confidentiality Agreements before they work with any confidential information.
Thirdly, all research projects that wish to use WAGER must be submitted to and approved by one or more Western Australian ethics committee/s.
WAGER itself has been approved by and operates under the supervision of the ethics committees listed in the Your Privacy section on the website.
WAGER abides by the Privacy Act 1988 (Cth) and its National Privacy Principles.
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