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.

Substudies

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 (unless a student will be undertaking the analysis, in which case, the supervisor should also be nominated).

*Exceptions:

  • 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 survey data.

However, if your project involves linked data, you may need to budget for:

  • 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 an availability and cost-recovery basis.

If you wish to conduct a substudy, there may be a cost involved. Please see the substudy policy document.

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 submit an amendment?

Submit a new online EoI https://www.alswh.org.au/EoIForm/login.php In the application provide details of which EoI is being amended and whether the original version of the EoI is to remain open or made inactive.

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 sph-wha@sph.uq.edu.au

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 sph-wha@sph.uq.edu.au

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 sph-wha@sph.uq.edu.au 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.

 

Data Linkage: Admitted Patient and Hospital Data

Women's Health Australia has Admitted Patient/Hospital data from Australian States and Territories linked to survey data for the 1921-26, 1946-51, and 1973-78 cohorts. The 1989-95 cohort has its data linked to all States and Territories except NSW and ACT. Each State and Territory dataset is distinct in terms of its data contents and date ranges.

Not all of the linked datasets from the state based Admitted Patients data collections include private hospital patients. The New South Wales, Western Australia and Queensland admitted patient datasets do contain both public and private hospital patients. The South Australian, ACT and Tasmanian datasets only have public hospital patients.

NSW and ACT 

  • Admitted Patient data from NSW and ACT were linked in 2017.
  • Opt-outs from the NSW and ACT linkage included:
    • 309 women from the 1921-26 cohort,
    • 601 women from the 1946-51 cohort, and
    • 725 women from the 1973-78 cohort.

NSW Admitted Patient Data Collection

  • The NSW Admitted Patient Data Collection includes records for all hospital separations from all NSW public and private hospitals and day procedure centres.
  • There are 84,405 records from 10,865 individuals.
  • The earliest record is 2 January 1997 and the latest record is 31 March 2017.
  • Note that Hospital_Type has a value 4 = Private Hospital. This is not currently on the Data Dictionary.

ACT Admitted Patient Care

  • The ACT Admitted Patient Care data only has records from Canberra Hospital.
  • There are 1354 records from 437 individuals.
  • The earliest record is 02 July 2004 and the latest record is 25 June 2016.

Western Australia

  • Admitted Patients data (60,914 records from 5,573 individuals) and Emergency Department (29,351 records from 4,725 individuals) from Western Australia were linked in 2018.
  • The earliest Admitted Patient admission record was January 1970 and the latest record was December 2017.
  • The earliest Emergency presentation date record was January 2002 and the latest record was October 2018.
  • The following numbers of women opted out of this linkage:
    • 353 women from the 1921-26 cohort,
    • 753 women from the 1946-51 cohort,
    • 739 women from the 1973-78 cohort, and
    • 38 women from the 1989-95 cohort.

Queensland

  • Admitted Patients data (64,234 records from 10,326 individuals) from Queensland were linked in 2018.
  • The earliest record is July 2007 and the latest record is December 2017. Queensland hospital data was linked earlier and ranged from 2002 to 2011 but the 2002 to 2006 records did not include private hospitals. Therefore these early 2002 to 2006 records were not included in the most recent linkage.
  • Opt-outs included:
    • 353 women from the 1921-26 cohort,
    • 753 women from the 1946-51 cohort,
    • 738 women from the 1973-78 cohort, and
    • 45 women from the 1989-95 cohort.

South Australia

  • South Australia Public Hospital Separations data (17748 records from 3438 individuals) data were linked in 2018.
  • The earliest separation date is July 2001 and the latest record is March 2018.
  • Women who did not consent to linkage included:
    • 353 women from the 1921-26 cohort, 
    • 753 women from the 1946-51 cohort
    • 738 women from the 1973-78 cohort, and
    • 37 women from the 1989-95 cohort.

 Tasmania

  • Tasmanian Public Hospital Admitted Patients Episodes data were linked in August 2018 for the period 01/01/2007 to 31/12/2017.
  • The dataset has 4272 records from women from all the ALSWH cohorts.
  • The following numbers of women opted out of this linkage:
    • 353 women from the 1921-26 cohort, 
    • 753 women from the 1946-51 cohort,
    • 739 women from the 1973-78 cohort, and
    • 38 women from the 1989-95 cohort.

Northern Terrritory

  • Northern Territory Public Hospital Inpatient data (518 individuals) data were linked in 2018 and 2019.
  • The earliest discharge date is July 2000 and the latest record is July 2018.
  • Women who did not consent to linkage included:
    • 353 women from the 1921-26 cohort, 
    • 753 women from the 1946-51 cohort,
    • 738 women from the 1973-78 cohort, and
    • 37 women from the 1989-95 cohort.

Victoria

  • Victorian Admitted Episodes Dataset (VAED) data were linked in 2018/19 for the period 01/01/2007 to 31/12/2017.
  • The dataset has 118,332 records from 12,968 women from all the ALSWH cohorts.
  • The following numbers of women opted out of this linkage:
    • 353 women from the 1921-26 cohort, 
    • 753 women from the 1946-51 cohort,
    • 739 women from the 1973-78 cohort, and
    • 38 women from the 1989-95 cohort.

    Resources

    In addition to the resources detailed below, there are other documents including the Data Linkage Report that will be available to investigators on delivery of data.

    Download File Type
    List of Admitted Patient and Hospital Data PDF
    List of Western Australia Emergency Data PDF



     

     


Data Linkage: Aged Care Data

Aged Care datasets linked to Women’s Health Australia survey data are available for the 1921-26 and 1946-51 cohorts. Aged Care data was first linked in 2014 and a full update was performed in 2016. There were 357 women from the 1921-26 cohort and 753 women from the 1946-51 cohort who opted out of the 2016 Aged Care linkage.

Aged Care Datasets (excluding Department of Veterans’ Affairs data)

There are many Aged Care datasets linked to the Women’s Health Australia survey data. Here is a description of the datasets with a glossary of abbreviations provided below.

B_cohort_ACAP_data
This file contains all assessment records (19,158) for cohort members from the ACAP MDSs. Variables relate to details on current situation and service needs. The most recent record was June 2014.

C_COHORT_HACC_QTRS_DATA0114
This file contains all the quarterly records (176,258) for the cohort from the HACC MDSs with details on service provision from 2001–02 to 2013–14. The most recent record was June 2014.

D_COHORT_RCS_APPRAISALS
This file contains all the appraisal records (6,435) relating to RCS appraisals. The most recent record was July 2009.

D_cohort_ACFI_data
This file contains all the ACFI appraisal data (7,829 records) for the cohort. The most recent record was December 2014.

D_cohort_admissions_minus_tcp
This file contains admission dates as reported for RAC (permanent and respite), CACP, EACH, EACHD and HCP (14,125 records), where the admission date is before 1 July 2014. The most recent record was August 2015.

D_cohort_tcp_admissions
This file contains TCP admission dates as reported, and other data related to the period in TCP (850 records), where the admission date is before 1 July 2014. The most recent record was July 2014.

D_cohort_HCP_level_changes
This file contains the changes in HCP care level identified for the cohort. The most recent record was July 2014 (385 records). The most recent record was April 2015.

D_cohort_rac_packages_leave
This file contains all 20,420 records relating to periods of leave for clients of RAC and community packages programs. The most recent record was August 2015.

e_COHORT_all_events_dates
This file has a record for each admission into RAC (permanent and respite), CACP, ACAP, EACH, EACHD, HACC, HCP, TCP and for each cohort death. There are 77,602 records. The most recent record was September 2015

Glossary of Aged Care Terms

ACAP - Aged Care Assessment Program
ACFI - Aged Care Funding Instrument
AIHW - Australian Institute of Health and Welfare
CACP - Community Aged Care Packages
CN - Community Nursing
DVA - Department of Veterans’ Affairs
EACH - Extended Aged Care at Home
EACHD - Extended Aged Care at Home Dementia
HACC - Home and Community Care
HCP - Home Care Packages
MDS - Minimum Data Set
RAC - Residential Aged Care
RCS - Resident Classification Scale
TAS - Treatment Accounts
TCP - Transition Care Program
VHC - Veterans’ Home Care

Department of Veteran’s Affairs (DVA) Aged Care Datasets

w_alswh_community_nurs
This file contains 40609 records; the most recent record was Aug 2017. The Community Nursing (CN) data comes from two sources:

  • Treatment Accounts (TAS) data, electronically sent to DVA from Department of Human Services (Medicare Australia)
  • A Minimum Data Set submitted by the CN provider to Department of Human Services (Medicare Australia) and then received by DVA

Veterans’ Home Care (VHC)

Only DVA clients that have been selected by the Australian Institute of Health and Welfare (AIHW) and have VHC assessments have been extracted. ‘Client_Surrogate_Key’ was used to match the participants with a DVA client unique identifier.

W_ALSWH_VH_AI_QSTN_ANSWER

W_ALSWH_VH_ASSESSMENT

W_ALSWH_VH_SERVICE_PLAN

W_ALSWH_VH_AI_QR_EXTRA

In broad terms, the following data were provided:

  • Assessment agency details, e.g. name, region, and state
  • Service plans/services recommended
  • Quantity and cost of services (Some services require the recipient to pay a small co-payment, e.g. $5. The co-payment has been included in the cost. If required, we can provide separate DVA/client payments, however, the calculation is not straightforward. Some clients/services have a cap on the maximum payment that can be made by the client.)
  • Assessment details of the client including Assessment Instrument questions asked, answers, and comments (where available)
  • Reference tables that may be useful in understanding the data

Resources

In addition to the resources detailed below, further documentation will be made available to investigators on delivery of data.

Download File Type
Summary of the Non-DVA Aged Care Datasets provided to Women’s Health Australia (ALSWH) PDF
List of Aged Care and DVA Aged Care Variables PDF
Summary of the DVA Community Nursing  PDF
Summary of the DVA Veterans’ Home Affairs  PDF

 

 

 

Acknowledgement of linked data sources

ALSWH’s national longitudinal surveys are complemented by an extensive health record linkage program.  Linked data are essential for our comprehensive analyses of women’s health and health service utilisation, which ultimately inform Australian health policy.

ALSWH is extremely grateful to the responsible Data Custodians and Data Linkage Units for access to these collections.  Specifically, we acknowledge the following:

Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Scheme (PBS) data
The Departments of Health, Veterans’ Affairs, and Medicare Australia for providing MBS and PBS data, and the Australian Institute of Health and Welfare (AIHW) as the integrating authority.

National Death Index (NDI)
The Data Linkage Unit at the Australian Institute of Health and Welfare (AIHW) for undertaking the data linkage to the NDI, and the contributing State and Territory Death Registers.

Aged Care Collections
The Departments of Health and Veterans’ Affairs for providing Aged Care data, and the Australian Institute of Health and Welfare (AIHW) as the integrating authority.

Australian Cancer Database
All State and Territory Cancer Registries for contributing data, and the Australian Institute of Health and Welfare (AIHW) as the integrating authority.

Hospital Admissions, Emergency Department and Perinatal Data Collections

  • The Centre for Health Record Linkage (CHeReL), NSW Ministry of Health and ACT Health, for providing the NSW Admitted Patients and Perinatal Data Collections, and the ACT Admitted Patient Care and Maternal Perinatal Data Collections.

  • Queensland Health, including the Statistical Services Branch, for providing the Queensland Hospital Admitted Patient and Queensland Perinatal Data Collections.

  • Department of Health Western Australia, including the Data Linkage Branch, and the WA Hospital Morbidity Data Collection, Midwives Notification System, and Emergency Department Data Collection.

  • SA NT Datalink, and SA Health and Northern Territory Department of Health, for providing the SA Public Hospital Separations, SA Perinatal Statistics, NT Public Hospital Inpatient Activity and NT Perinatal Trends Data Collections.

  • Tasmanian Data Linkage Unit, and the Department of Health and Human Services Tasmania, for providing the Public Hospital Admitted Patient Episodes and Perinatal Data Collections.

  • Centre for Data Victorian Linkage, Department of Health and Human Services Victoria, for providing the Victorian Admitted Episodes Dataset, and the Consultative Council on Obstetric and Paediatric Mortality and Morbidity for the Victorian Perinatal Data Collection.

ALSWH is also supported by the Population Health Research Network which is a capability of the Australian Government National Collaborative Research Infrastructure Strategy and Education Investment Fund Super Science Initiative. Click here to find out more about ALSWH’s linked data holdings.

Data Linkage: Cancer Data

The Australian Longitudinal Study on Women's Health linkage to the Australian Cancer Database.

In August 2019 ALSWH data were linked to the Australian Cancer Database, ACD. The resulting single dataset has cancer information from all states and territories for those ALSWH women who did not opt out of this linkage. This dataset replaces the previous state-based linked cancer datasets ALSWH had from some but not all of the states. The linkage was probabilistic and carried out by the AIHW Data Linkage Unit. Cancers from 1982 to 2015 are included, except for New South Wales which only includes cancers up to December 2014.

The four ALSWH birth cohorts 1921-26, 1946-51, 1973-78 and 1989-95 were linked to the ACD.

Resources

List of Cancer variables

Linkage Report

Meta Data description