Data Access and Research Outcomes – FAQs
How can I access ALSWH data?
Follow the instructions outlined on the website https://www.alswh.org.au/how-to-access-the-data/alswh-data and make an application using the online application form https://www.alswh.org.au/EoIForm/login.php
What linked health record collections are available?
Women's Health Australia (also known as the Australian Longitudinal Study on Women's Health) has access to a number of State, Territory, and National datasets. State-based datasets linked to survey participants include Admitted Patients and Perinatal collections. National collections include MBS, PBS, Aged Care, and Cancer. For more information, see http://www.alswh.org.au/how-to-access-the-data/external-linked-datasets
Do I need separate ethical approval to use ALSWH data?
It is not necessary to obtain separate ethics for survey data as the ALSWH Data Access Committee provides this coverage, however you should check with your own institution's policies.
Separate ethical approval from your home institution or other Human Research Ethics Committee is
required before a substudy will be approved by the ALSWH Data Access Committee.
Linked data projects
If you include linked health record data (such MBS, Admitted patients) in your EoI, application for HREC and Data Custodian approval will usually* be managed by ALSWH on your behalf. Depending on the data sources involved, you may be required to sign additional documents, which we will submit under amendments to our existing HREC protocols. Please be aware that this is likely to involve additional processing time (over and above the EoI approval period), also, that ALSWH's ability to act on your behalf depends on the quality of the information you provide in your application for data. Please also note that no more than two external (non-ALSWH) collaborators should be nominated to access linked data, per EoI.
- Your project is a substudy, in this case, see under "Substudies"
- Your project includes additional external data sources other those for which ALSWH has approval. In this case, you should apply to all necessary HRECs on your own behalf. The ALSWH Data Access Team can offer advice on the information to include in any linked data applications.
When will I know if my application has been successful?
There are six submission dates per year. The timeline from the application closing date to approval is approximately 2 months (HREC approvals for EoIs involving linked data require additional time before data access can be granted). The schedule of applications can be found on the website https://www.alswh.org.au/how-to-access-the-data/alswh-data
What if my application is not adequate?
Your application will undergo an initial administrative check, if it is determined at this stage that more information is required you will be contacted and asked to revise your application prior to it being circulated for full committee review.
Comments will be provided to you following the Data Access Committee review. At this stage you may be asked to revise your application to address Committee concerns, prior to final approval.
I am a student, can I submit / lead my own project?
Post graduate students are encouraged to lead their own projects, particularly where the research will contribute significantly towards their award. An exception to this is where linked data are being requested, in this case the primary supervisor needs to be listed as the lead collaborator.
My project has been approved, when will I receive the ALSWH survey data?
Once all nominated collaborators have signed and returned the required documentation (statement of data use document and confidentiality statement, where necessary) the data will be prepared and delivered via Cloudstor.
My project involves linked data, when will I be provided with access to the linked data?
In addition to the requirements above, HREC and Data Custodian approval for you to access each linked dataset listed on your EoI must be received by ALSWH (this will be obtained on your behalf, subject to full and accurate details being provided in your EoI). While we make every effort to expedite this process, depending on the number of datasets and custodians involved, this may require several weeks over and above the standard EoI processing time of 2 months.
What does it cost to access ALSWH survey data?
ALSWH is a public resource funded by the Australian Government Department of Health and does not charge any fees to access data.
However, if your project involves linked data, you may need to budget for either:
- travel to one of the approved study sites (School of Public Health at The University of Queensland, or Priority Research Centre for Generational Health and Ageing at the University of Newcastle);
- access via SURE (https://www.saxinstitute.org.au/our-work/sure), please consult your Institutional Librarian for information about fees for this facility; OR
- Pay for an ALSWH statistician to perform the analyses, on a cost-recovery basis.
When do I need to submit an amendment to my EoI?
Amendments are required when:
- New data are required (a new age cohort, specific data such as Food Frequency Questionnaire, Child dataset, Medications, Cause of Death or linked data)
- The research question/s change or a new research question is added
- The analysis plan changes.
How do I add a new collaborator to my project?
Adding additional collaborators to an existing project is considered an update and no additional approvals are required. Such updates can be requested by emailing firstname.lastname@example.org
Please note – any additional collaborators are required to sign the relevant documentation prior to accessing ALSWH data.
If your project involves linked data, changing the name of the collaborator who is responsible for analysis of the linked data will require new HREC / Data Custodian approvals for each linked dataset (see under "Linked Data Projects") unless the new collaborator is already on the list of currently approved personnel for each linked dataset in question.
I want to add the latest survey of an already approved dataset
The addition of the latest survey of an already approved dataset project is considered an update and no additional approvals are required. The same applies to requests for refreshed datasets. Such updates can be requested by emailing email@example.com
What do I need to do before I publish or present findings using ALSWH data or ALSWH data that has been linked with external datasets (linked data)?
Your manuscript or abstract should be reviewed and approved by your ALSWH Liaison person prior to submission. Please ensure the standard ALSWH acknowledgement is used, as well as the acknowledgement for the Food Frequency Data if these data were used, see http://www.alswh.org.au/for-researchers/dissemination
In addition, if you are reporting results which used linked data:
- For some linked data collections, Data Custodian preview of any proposed publication (including manuscripts, reports, presentations, and posters) is a condition of ALSWH's Data Use Agreements.
- You must correctly acknowledge the contribution of every data source and data linkage unit responsible for the data reported in your findings. Please use the standard acknowledgement text provided on our web site.
(See http://www.alswh.org.au/for-researchers/external-linked-datasets for more information.)
Do I need to submit my thesis for review by ALSWH prior to submission to my university?
No, it is not necessary to submit your thesis for review by ALSWH, however your liaison person should be satisfied that the ALSWH data have been used and acknowledged appropriately prior to submission. However we do ask for a lay synopsis or abstract of your thesis once you have been awarded your degree.
When do I need provide progress reports?
Progress reports are requested at least annually, the lead collaborator is responsible for completing these reports.
My project is completed, what do I need to do to officially close the project?
Please email firstname.lastname@example.org to advise the completion of the project and provide a final report. The final report should include a summary of your project that explains your research question/s, the most significant findings and a summary of research outcomes from the project.