Application

Data application process

Jurisdiction-based processes

What makes a good application?

Tips for submitting an application

The data application process

This is an overview of the common elements in all data application processes. For a more detailed description of the application process relevant to your project, review the material in the ‘Jurisdiction-based processes’ section and visit the website of the Data Linkage Unit/s (DLU) that will be linking the data. 

A list of the DLUs, the jurisdictions they cover, and their website addresses is available here.

After reviewing the relevant DLUs website, contact the Client Services team to discuss your application.

Submit your application via the application process for the relevant DLU.

Once submitted, the application will be reviewed by a client services officer to ensure it is complete and well-conceived prior to forwarding it, on behalf of the researcher, to the relevant data custodians for review.
After feedback has been received from the relevant data custodians, researchers are required to amend their application to incorporate suggested changes. Researchers are required to send the final version of their formal application to client services for review. This helps to ensure that the researcher has addressed all of the feedback provided and incorporated required changes. It assists in improving the efficiency in the submission to ethics and subsequent release of data.


At this stage, the data custodian will provide in-principle support, conditional approval, or reject the application. Note that data custodians typically will not provide final approval until the project has received ethics approval. Researchers will also receive a feasibility letter stating that the linkage is technically feasible and that the DLU is able to do it.

In most jurisdictions, researchers are encouraged to apply for ethics approval after they have received:

  • conditional approval from each of the data custodians from which they are requesting data, and
  • the technical feasibility letter from the relevant data linkage unit(s).


The client services officer/s of the DLU/s linking the data should be able to provide you with guidance on this.

The data linkage unit/s will notify you once the project has all its approvals in place, i.e. data custodian, ethics, research governance, and any other approvals required.

Jurisdiction-based processes

The PHRN is comprised of seven Data Linkage Units that serve nine jurisdictions in Australia.  Each jurisdiction’s application process differs slightly. The application process for cross- and multi-jurisdiction data linkage projects also differs and is dependent on the data source/s.

ACT

The diagram below describes the steps involved in gaining approval to access ACT data, more detailed information about each step can be viewed via the ‘Read more’ button.

Dataset and variable information can be found on the CHeReL website.

Here are the forms you need to complete if you are applying for ACT linked data

If you need help, you can contact our Research Project Managers by emailing MOH-cherel@health.nsw.gov.au.

These forms will also form the core of your application for Ethics approval from the Population & Health Services Research Ethics Committee (PHSREC).

Most data linkage projects will need PHSREC approval. Discuss with your Research Project Manager if you are seeking approval from another Human Research Ethics Committee (HREC) under the National Mutual Acceptance (NMA) Scheme or you have a Biolink project.

When your submission is ready, please email the completed forms to the Research Project Managers at: moh-cherel@health.nsw.gov.au.

We will review your application, provide feedback and a quote. Please allow 2-4 weeks for us to respond.

Please note, the NSW Central Cancer Registry (NSW CCR) and the 45 and Up Study may charge a fee for data extraction which is not included in the CHeReL quote.

For more information on cost of requesting CCR, please contact the Cancer Institute NSW at: CINSW-DARenquiries@health.nsw.gov.au

For more information on cost of requesting data from the 45 and Up Study, please contact the Sax Institute at: 45andup.research@saxinstitute.org.au.

Once your team has addressed any feedback from the Research Project Manager, the project will be deemed technically feasible.

You will receive an email to confirm technical feasibility. ACT Health will ask for this during their approval process.

Submit your HREC application form and other supporting documents to the appropriate ethics committee.

ACT only data

If your project has ACT-only data, you should submit to ACT Health HREC first.

You will need to submit the following documents: cover letter, combined protocol and application for data, HREA, data linkage flow chart (where applicable), variable list(s), ACT Health Waiver of Consent Request Form, and all documentation relevant to the project, such as participant information and consent forms.

ACT and NSW data

  • If a research project includes both ACT and NSW data, you will need to obtain all NSW data custodian approvals, and submit required documents to NSW Population & Health Services Research Ethics Committee (PHSREC) first. If applying through the PHSREC you will need to complete and submit CHeReL/PHSREC forms for review to MOH-CHeReL@health.nsw.gov.au prior to submitting to ethics.
    If the project includes all ACT public hospitals, you will also need to submit to Calvary Public Hospital HREC
  • Once PHSREC approval has been received, you will then need to
    submit to ACT Health HREC.
  • Once ACT Health HREC approval has been received, you will need to contact the relevant ACT data custodians to obtain sign off.

Please check the CHeReL website and each ethics committee website for their requirements.

Obtain data custodian sign off for ACT data sets.

Once you receive notice of ethics approval from the ACT Health HREC, please contact relevant data custodians to obtain sign off. ACT Health will advise on this process.

When you obtain both ethics and data custodian approvals, please notify the CHeReL and send us a copy of all documents listed on your approval letters. Please send this to moh-cherel@health.nsw.gov.au

AIHW

The diagram below describes the steps involved in gaining approval to access Commonwealth data,
more detailed information about each step can be viewed via the ‘Read more’ button.

Please review the Australian Institute of Health and Welfare (AIHW) website and contact AIHW staff to discuss your project.

Dataset and variable information can be found on the AIHW website:

  • Information about internal AIHW datasets
  • List of additional external data sets that are commonly linked

In planning your study, you will need to:

  • Decide which datasets you would like to link for your project
  • Determine how you intend to identify your cohort – do you hold the identifiers for them already, or will you ask AIHW or another linkage unit to apply criteria to another dataset to identify them?
  • Gather information on the appropriate use of any personal data you hold that you are intending to use in linkage. You should obtain and review any consent or participant information forms that were supplied to participants. You will need to supply these forms to AIHW.

Here are the forms you need to complete if you are applying for linked Commonwealth data

  • Feasibility questionnaire form
  • Technical assessment form
  • AIHW Ethics Committee application form (Online EthOS system)
  • Confidentiality Agreement (s29 form)
  • ‘Home’ Ethics Committee application form
  • Data custodian application forms for certain datasets

This questionnaire gathers information to allow AIHW to identify any technical, privacy or ethical issues that require resolution before completing a full technical assessment.

Please email the AIHW Data Integration Services Centre at linkage@aihw.gov.au to obtain a ‘request for linkage of national data:
feasibility questionnaire form’.

Complete the form and return it to linkage@aihw.gov.au

Upon submission for review, you will be issued an invoice for the appropriate feasibility and quotation fee.

Upon approval of your feasibility questionnaire you will be sent a technical assessment form. An invoice for the feasibility assessment service and a whole-of-project quote will also be issued for acceptance before progression to ethics approvals.

Once your team has addressed any feedback from the Data Integration Services Centre, your project will be deemed technically feasible.

The technical assessment provides the AIHW Ethics Committee with information about the technical elements of your project.

All technical assessments must be signed off by the Data Integration Services Centre prior to consideration by the AIHW Ethics Committee. This document should accurately describe your project as AIHW cannot facilitate any use of data which falls outside its specifications.

Please submit the technical assessment form to linkage@aihw.gov.au.

We recommend that you leave plenty of time for the technical assessment to be finalised. Draft technical assessment forms need to be completed and sent to the Data Integration Services Centre at least 8 weeks before the AIHW Ethics Committee meeting application submission deadline.

While the Data Integration Services Centre will make every effort to progress your project as quickly as possible, we cannot guarantee that all projects will be assessed in time for submission to an upcoming AIHW Ethics Committee meeting.

Submit your AIHW Ethics Committee application using the online  EthOS  system.

We recommend that you start your EthOS application as soon as possible, however, you will need the signed-off technical assessment form to lodge the ethics application.

It is important that information in your technical assessment and EthOS forms are consistent.

You will attach the Confidentiality Agreement (s29 form) to the EthOS application.

You are required to obtain additional approval from a ‘home’ Ethics Committee. This application must include the linkage work that you are requesting. A ‘home’ Ethics Committee is an Ethics Committee associated with your organisation. Where such an Ethics Committee is not available, you should apply to a National Health and Medical Research Council
registered or certified Human Research Ethics Committee.

You will attach the Ethics Committee approval letter to your EthOS form, or state that the approval is ‘pending’.

For more information on the AIHW Ethics Committee, including EthOS and application fee details please visit the AIHW website: AIHW Ethics Committee – Australian Institute of Health and Welfare

Once you receive your AIHW ethics approval letter, please send the approval letter to linkage@aihw.gov.au, so the data custodian application processes can commence.

The use of each dataset involved in a data linkage project must be approved by the relevant Data Custodian.

The data custodian approval process varies by dataset. The team in the AIHW Data Integration Services Centre (linkage@aihw.gov.au) will advise on the process and provide you with the relevant Data Custodian forms.

For certain datasets, AIHW will apply for the data custodian approval on your behalf. Examples include the Pharmaceutical Benefits Scheme, Medicare Benefits Schedule, DOMINO and the Australian Early Development Census. We will let you know when the approval letters have been issued.

For all other datasets, you will need to apply for this approval. An example is the Australian Cancer Database. We will send you advice about how to apply for these approvals. Once you have gained the approvals, please send the approval letters to linkage@aihw.gov.au

NSW

The diagram below describes the steps involved in gaining approval to access NSW data. More detailed information about each step can be viewed via the ‘Read more’ button. For pricing information please click here. If you are an employee of NSW Health and will be using data for funding, management, planning or evaluation purposes please CHeReL. The steps below detail the process for all research related data requests.

Dataset and variable information can be found on the CHeReL website.

NSW Health recommends disclosing unit record health data intended for secondary use by external parties into a suitable Secure Access Environment (SAE). Consequently, all relevant new data projects are required to comply with this recommendation.

For additional details regarding suitable Secure Access Environments (SAE) and when they are recommended, please refer to this website: https://www.health.nsw.gov.au/data/sharing/Pages/secure-access-environments.aspx

Here are the forms you need to complete if you are applying for NSW linkeddata:

If you need help, you can contact our Research Project Managers by emailing MOH-cherel@health.nsw.gov.au.

These forms will also form the core of your application for Ethics approval from the Population & Health Services Research Ethics Committee (PHSREC).

Most data linkage projects will need PHSREC approval. Discuss with your Research Project Manager if you are seeking approval from another Human Research Ethics Committee (HREC) under the National Mutual Acceptance (NMA) Scheme or you have a  Biolink  project.

When your submission is ready, please email the completed forms to the Research Project Managers at: moh-cherel@health.nsw.gov.au.

CHeReL will review your application, provide feedback and a quote. Please allow 2-4 weeks for a response.

Please note, the NSW Central Cancer Registry (NSW CCR) and the 45 and Up Study may charge a fee for data extraction which is not included in the CHeReL quote.

For more information on cost of requesting CCR, please contact the Cancer Institute NSW at: CINSW-DARenquiries@health.nsw.gov.au

For more information on cost of requesting data from the 45 and Up Study, please contact the Sax Institute at: 45andup.research@saxinstitute.org.au.

Once your team has addressed any feedback from the Research Project Manager, the project will be deemed technically feasible.

You will receive an email to confirm technical feasibility and you can upload this to REGIS as part of your submission to PHSREC.

The use of each dataset involved in a data linkage project must be approved by the relevant Data Custodian.

The team at CHeReL will seek data custodian approval on your behalf for data sets in the Master Linkage Key.

CHeReL will send their approvals to you as they receive them.

Please allow 2-4 weeks for Master Linkage Key data custodian approvals.

Your team will need to arrange data custodian approvals for all other data collections. Please send data custodians the same submission documents. Let the Research Project Managers know if you need help.

Submit your data custodian approvals, technical feasibility letter and all application documents to PHSREC.

Please submit all documents to PHSREC via REGIS. PHSREC and other HRECs may require additional documentation. Please consult the relevant HREC andallow sufficient time to prepare other forms.

When you obtain both ethics and data custodian approvals, please notify then CHeReL and send a copy of all documents listed on the approval letter to moh-cherel@health.nsw.gov.au.

Northern Territory

Please review the SA NT DataLink website and contact SA NT DataLink staff to discuss your project.

Whether you are applying for a project in Northern Territory, or a cross/multi-jurisdictional project using Northern Territory datasets, it is encouraged that you discuss your project with SANT DataLink staff before applying. You can contact SA NT DataLink at santdatalink@unisa.edu.au

Access the SA NT Datalink webiste for:

You may request a quote from SA NT DataLink through the PHRN Online Application System or by email at santdatalink@unisa.edu.au.

There are a set of mandatory forms and documents which must be completed for all projects, and a set of forms that are only required in certain circumstances.

  • A data linkage application through the Population Health Research Network Online Application System (OAS)
  • Variable request forms
  • SANT Deed of Confidentiality and Compliance
  • NT Health Appendices B and C
  • HREC application

The online application is supported with significant online help and researchers should firstly look to this for support. If you need help, you can contact the client services team by emailing santdatalink@unisa.edu.au

Complete the expression of interest form on the PHRN OAS

As a minimum, a finalised Expression of Interest will include a clearly formulated project plan that outlines the research aims and objectives, the data required to achieve the research aims, identifies the key stakeholders, and sets achievable timeframes.

A member of SA NT DataLink Client Services Team will review the expression of interest form, provide feedback and facilitate any meeting with Researchers, Data Custodians and Data Providers.

SA NT DataLink will assess the request for feasibility and if the project is considered technically feasible and feasible within timeframes, issue a Letter of Feasibility and a Quote.

When the project application is finalised the Expression of Interest can be converted to an Application within the Online Application System.

Approval from the Northern Territory Department of Health and Menzies School of Health Research HREC is required for all data linkage projects.

Please note that NT Health does not accept data linkage projects under the National Mutual Agreement Scheme.

  • Once you have a SA NT DataLink Letter of Feasibility you can seek NT HREC approval.
  • Follow the NT HREC Standard Application Process and ensure you use a full NT HREC application. Neither a low-risk application form, nor NMA forms can be used.
  • Submit your application by email to NTHREC@menzies.edu.au including:
  • SA NT DataLink Letter of Feasibility
  • HREC application documents
  • NT Data Elements Specification form
  • Other supporting documents

The use of each dataset involved in a data linkage project must be approved by the relevant Data Custodian.

For datasets held by SA NT DataLink

  • SA NT DataLink will submit to each participating data custodian for their final approval, the completed:
  • PHRN data linkage application
  • Copy of ethics application & approvals
  • Full list of requested analytical variables and justification
  • Signed Deeds of Confidentiality and Compliance for people accessing the data.
  • SA NT DataLink will send the final data custodian approvals to you as they receive them.

For datasets not held by SA NT DataLink

  • If the project requires linkage of datasets not held by SA NT DataLink, the researcher will need to contact the relevant data
    custodian directly and obtain approvals for project-specific linkage of these external datasets.
  • You will need to provide evidence of these approvals to SA NT DataLink and arrange for the approved external dataset(s) to be
    provided to SA NT DataLink.

Each Data Custodian will release linkage keys and de-identified data to you via secure data transfer.

Queensland

Please review the Data Linkage Queensland (DLQ) website and contact DLQ staff to discuss your project.

Whether you are applying for a project in Queensland, or a cross/multi jurisdiction project using Queensland datasets, please review the information on the DLQ website and contact DLQ if you have any questions.

You can contact DLQ at DLQ@health.qld.gov.au.

Datasets available for linkage in Queensland and variable information can be found in the:

Here are the forms you need to complete if you are applying for Qld linked data:

Any additional forms will be identified during negotiations with DLQ or other Data Custodians.

You are welcome to submit a draft PHA application to DLQ when you are ready and we are happy to review the draft PHA application before ethics has been finalised.  For more information about completing a PHA application see the SSB PHA Companion.

If your project involves consent, please contact DLQ at DLQ@health.qld.gov.au to discuss.

The use of each dataset involved in a data linkage project must be approved by the relevant Data Custodian.

It is strongly recommended that researchers contact DLQ and/or Data Custodians directly as early as possible, even before ethics application, to determine if the data they require are available.

The Data Custodians are provided with the PHA application and ethics approval (if available and any other relevant supporting information. In considering the project, a Data Custodian will consider data privacy, operational, policy and/or specific legislative requirements.

For datasets held by Queensland Health

DLQ Client Services staff will contact the Data Custodian for Queensland Hospital Admitted Patient Data Collection (QHAPDC), Perinatal Data Collection (PDC), Queensland Health non-Admitted Patient Data Collection (QHNAPDC) and Deaths data on behalf of the researcher.  The DLQ will notify you of the Data Custodian approval for these datasets.

Additional Queensland Health Data Custodians will contact you directly when they have approved your application. Depending on the complexity of your application it may take several weeks or months for your application to be reviewed and approved. 

For datasets external to Qld Health

Your team will need to contact the relevant Data Custodian directly for all other data collections and arrange for approvals.

Please provide evidence of the relevant Data Custodians’ approval for the use of the dataset in the research project and arrange for the approved external dataset/s to be provided to DLQ.

A list of Queensland Health Data Custodians is available on the QH website.

Ensure the same information is supplied in both your PHA and your HREC application.

The Public Health Administrator in Queensland Health is the contact for researchers seeking advice and direction on ethical and governance issues associated with the conduct of research using Queensland Health data. The HREC approval is assessed by the Public Health Act administrator in Queensland Health. 

When you obtain ethics approval, please notify the DLQ and send a copy of the approval letter and all documents listed on the approval letter to DLQ@health.qld.gov.au.

A PHA application is required for projects that do not have participants consent.

A PHA application is required when a researcher the release of confidential information for research purposes held by Queensland Health where both of the following apply

  • valid consent by, or, where relevant, on behalf of the individual about whom the Information relates has not been obtained for the disclosure and/or use of the Information for the purposes of approved research
  • valid consent by, or, where relevant, on behalf of the individual about whom the Information relates has not been obtained for the disclosure and/or use of the Information for the purposes of approved research

A data custodian may also request a PHA grant be obtained prior to disclosing the Information to provide assurance of valid authorisation to disclose. Note that an ‘opt-out’ consent does not constitute a valid consent and a PHA approval may be required. Please check with your local Research Governance Officer (RGO).

The process

  • It is important that the project described in the PHA application form does not deviate from the HREC approved ethics application / protocol. DLQ Client Services staff will respond to your initial email within 2 weeks. 
  • The time frame for further review of your application will depend on the complexity of your request, clarity of information in your application and available DLQ resources.
  • Each data custodian provides authorisation by signing and dating the PHA application form.  
  • The CPI/PI signs the Undertaking of Confidentiality and the applicant emails the completed form to PHA@health.qld.gov.au with supporting documentation including:
  • evidence of HREC approval (final approval letter)
  • any relevant HREC amendment approvals
  • Provided all requirements of the PHA application are met, the Director-General of Queensland Health or their delegate will consider the PHA application.

The Queensland Health PHA application process is overseen by the Public Health Act Administrator within the Office of Research and Innovation. Any questions about governance issues should be directed to PHA@health.qld.gov.au

Once you receive your final approval notice from the Queensland Health Director-General (or delegate), please send the approval letter and a copy of all the documents listed on the approval letter to data custodians (in the case of SSB, email DLQ@health.qld.gov.au).

The SSB will commence extraction and linkage of the requested data following the receipt of your final approval notice.

South Australia

Whether you are applying for a project in South Australia, or a cross/multi-jurisdictional project using South Australian datasets, we encourage you to discuss your project with SA NT DataLink staff before applying. You can contact us by email

Recommended reading

Access the SA NT DataLink website for

Submit your quote or expression of interest form via the PHRN OAS.

  • Complete and submit your quote or Expression of Interest form via the PHRN OAS.
  • A member of SA NT DataLink Client Services Team will review the expression of interest form, provide feedback and facilitate any meeting with researchers, Data Custodians, and Data Providers.
  • Once your team has addressed any feedback, SA NT DataLink will assess the request for feasibility and if the project is considered technically feasible and feasible within timeframes, issue a Letter of Feasibility and a Quote.      

Once the project application is finalised the Expression of Interest can be converted to an Application within the Online Application System. 

  • Finalise the application including data specifications and data flows.

Depending on the provenance of the data, ‘in principle’ approval requests will be facilitated by SA NT DataLink or, for health datasets, as a Site Specific Assessment (SSA) through SA Health’s research system that manages all research ethics and governance activities.

Data custodians may provide conditions relating to provision of their data.

Once ‘in principle’ approval is received from relevant data custodians, researchers may then proceed to apply for ethical approval/s.

  • Check the SA Department for Health and Wellbeing Ethics Committee website for their submission checklist and due dates. 
  • Ensure the same information is supplied in both your PHRN OAS application and HREC application.
  • Researchers seeking access to SA Health data held by SA NT DataLink should submit their HREC applications to SA Department for Health and Wellbeing through the Research GEMS online system.

Your HREC application must include

  • Study protocol
  • Linkage application
  • Data linkage feasibility letter from SA NT DataLink
  • Completed data variable lists (as attachments, not embedded within the protocol).
  • Other documentation relevant to the project (e.g. consent forms)

Where ethics approval is accepted under the NMA, you will also need to apply for an SSA  through the Research GEMS online system (for assistance with this process, researchers should contact SA Department for Health and Wellbeing, Office for Research).

The process for mutual recognition is generally dealt with by the Research Governance Officer rather than the SA Health and Wellbeing HREC (although the HREC does provide advice on this matter). For SA Health to mutually recognise the approval from an external HREC outside of SA, it needs to be a NMA recognised HREC and the reviewing HREC needs to consider the South Australian component of the study (e.g. SA Health data being used) as part of the overall proposal, and SA Health (or SA DHW) needs to be listed as an approved site, where SA Health data is being linked.

When you obtain ethics approval(s), please notify SA NT DataLink and send a copy of all documents listed on your approval letters, including the HREC application itself.

The use of each dataset involved in a data linkage project must be approved by the relevant Data Custodian.

The process

  • SA NT DataLink will submit to each participating data custodian for their final approval, the completed
  • PHRN data linkage application  
  • Copy of ethics applications & approvals
  • Full list of requested analytical variables and justification
  • Signed Deeds of Confidentiality and Compliance for people accessing the data.
  • SA NT DataLink will send the final data custodian approvals to you as they receive them.

If the project requires linkage of datasets not held by SA NT DataLink, the researcher will need to arrange data custodian approvals for project-specific linkage of these external datasets and provide evidence of these approvals.

Please note that while the scheduling of work by agencies outside of SA NT DataLink is not within its control, SA NT DataLink will endeavour to facilitate the delivery of theapprovals and data in a timely manner.

Once all approvals have been obtained, SA NT DataLink will commence linkage.

Each Data Custodian will release linkage keys and de-identified data to you via secure data transfer.

Tasmania

Please review the Tasmanian Data Linkage Unit (TDLU) website and contact TDLU staff to discuss your project.

Whether you are applying for a project in Tasmania, or a cross/multi-jurisdictional project using Tasmanian datasets, it is encouraged that you discuss your project with TDLU staff before applying.

Dataset and variable information can be found on the TDLU website

Linkage of additional datasets, including study cohorts, can be negotiated on a case-by-case basis. Contact the TDLU to discuss whether a dataset can be linked.

You can contact the TDLU at menzies.tdlu@utas.edu.au or by phone on 03 6226 4291.

You may request a quote from the TDLU via the PHRN Online Application System or by email at menzies.tdlu@utas.edu.au.

There are a set of mandatory forms and documents which must be completed for all projects, and a set of forms that are only required in certain circumstances.

If you would like the TDLU to review a draft ethics application, you can contact the TDLU by emailing menzies.tdlu@utas.edu.au

Expressions of Interest for both Tasmanian and cross/multi-jurisdictional data linkage projects can be submitted via the OAS.

As a minimum, a finalised Expression of Interest will include a clearly formulated project plan that outlines the research aims and objectives, the data required to achieve the research aims, identifies the key stakeholders, and sets achievable timeframes. Completed data variable lists must be attached to the Expression of Interest.

Once you have submitted your Expression of Interest via the OAS, a member of the TLDU will review it and feedback will be provided. When necessary, this feedback may involve making changes to the study design or methodology.

The TDLU will endeavour to review Expressions of Interest for single jurisdiction projects that are lodged via the PHRN Online Application System within 10 business days or inform the applicant if there is an anticipated delay.

Once the study design is complete and feedback has been addressed, the TDLU will provide a data linkage feasibility letter and the Expression of Interest will be converted to an application in the OAS.

Submit your letter of feasibility, study protocol, completed variable lists and other supporting documents for HREC approval.

It is crucial that you ensure the same information is supplied in both your PHRN OAS application and HREC application.

Your HREC application must include a

  • Study protocol
  • Data linkage feasibility letter from the TDLU
  • Completed data variable lists (as attachments, not embedded within the protocol).
  • Other documentation relevant to the project (e.g. consent forms)

The Tasmanian HREC is not part of the National Mutual Acceptance (NMA) scheme. However, if a cross/multi-jurisdictional project has already received approval from a NHMRC registered HREC in a different jurisdiction, it may be eligible for the Tasmanian HREC Prior Approval pathway. Please see the University of Tasmania HREC website for more information.

Visit https://ethics.utas.edu.au/ to submit your online application for ethics.

Once your HREC application is approved, upload your HREC application and approval letter to the online application system and inform the TDLU.

The use of each dataset involved in a data linkage project must be approved by the relevant Data Custodian.

For datasets linked into the Master Linkage Map

The team at the TDLU will seek data custodian approval on your behalf for data sets in the Master Linkage Map. A list of linked datasets is available on the TDLU website.

To seek data custodian approval, the TDLU requires

  • A finalised Expression of Interest that has been converted to an Application on the Online Application System
  • A copy of the approved Tasmanian HREC application
  • The approval letter issued by the Tasmanian HREC
  • Completed variable lists in the official format provided by the TDLU

TDLU will notify you once all approvals have been obtained.
Data custodian approvals may take several weeks. A courtesy reminder email will be sent by the TDLU to the data custodian if required.

For external datasets not linked into the Master Linkage Map

Whether the TDLU or researcher contacts non-Master Linkage Map data custodians is decided on a case-by-case basis and depends on the custodian. 

Whether the TDLU or researcher contacts non-Master Linkage Map data custodians is decided on a case-by-case basis and depends on the custodian. 

Please provide evidence of the relevant Data Custodians’ approval for the use of the dataset(s) in the research project and arrange for the approved external dataset(s) to be provided to TDLU.

TDLU provides final approval and begins linkage. 

The TDLU will issue its final approval once HREC and Data Custodian approvals are obtained, and a data access agreement is signed.

The data access agreement will be provided to the researcher by the TDLU once all other approvals are in place and must be signed by the principal investigator.

If necessary, a revised quote for data linkage will be provided.

Victoria

Once you have completed the Recommended Reading, please contact the Centre for Victorian Data Linkage (CVDL) to discuss your project.

Whether you are applying for a project in Victoria, or a cross/multi jurisdiction project using Victorian datasets, it is encouraged that you discuss your project with the CVDL client services’ team staff before applying.

Recommended reading

Access the CVDL website for information on:

Contact the CVDL for a list of variables available in the CVDL’s Integrated Data Resource.

You may request a quote from the Centre for Victorian Data Linkage via cvdl@health.vic.gov.au.

There are a set of mandatory forms and documents which must be completed for all projects, and a set of forms that are only required in certain circumstances. More information on these forms can be found in the steps following.

Mandatory forms and documents

  • CVDL’s data linkage application
  • Project protocol
  • Health Research and Ethics Committee (HREC) application form
  • Department of Health Deed of Acknowledgment and Confidentiality
  • Technical specification form
  • Virtual Machine Application form
  • Certification by Head of Department/School/Research
  • Principal Investigator acknowledgment and endorsement

Additional documents

Some projects may also require a

  • Data Flow diagram (for complex projects)
  • Privacy threshold assessment may be required for some projects.

You can contact the CVDL at any time for help in the application process at cvdl@health.vic.gov.au.

Submit your data linkage application to the CVDL for an initial technical feasibility assessment.

A technical feasibility assessment involves checking

  • the application against the Information Privacy and Health Privacy principles from respective Acts ensuring the individual’s privacy is maximise, and assessing the potential risk of re‑identification
  • the availability of requested data items, operational considerations, data access requirements, and alignment with the department’s objectives.

The review process

  • Submit your data linkage application form to the CVDL for an initial technical feasibility assessment.
  • A member of the CVDL’s Client Services team will review your application and provide feedback to determine if it is technically feasible.
  • If the project is deemed technically feasible, the CVDL will arrange for you to access your project folder on the CVDL SharePoint site so that you can upload the application’s supporting documents mentioned previously.

If the project is deemed technically feasible, the CVDL will arrange for you to access your project folder on the CVDL SharePoint site so that you can upload the application’s supporting documents mentioned previously.

HREC approval must be obtained from an accredited Victorian HREC or, for cross-jurisdictional studies, from a certified HREC who is part of the National Mutual Acceptance (NMA) scheme.

For research that is reviewed by a non-Victorian or Interstate Ethics Committee, or part of the National Mutual Acceptance scheme, a Victorian Specific Module (VSM) must be attached to the HREC application.

The submission process

  • Send the VSM to cvdl@health.vic.gov.au for review prior to submitting to a specialist NMA data linkage HREC.
  • Submit your
  • Letter of feasibility
  • Application documents
  • Other supporting documents to the appropriate ethics committee.
  • Research teams are to submit their ethics application via the Ethics Review Manager (ERM) or attach the VSM to their HREC application to a NMA HREC.
  • When you obtain ethics approval, please notify the CVDL and send a copy of the approval letter and all documents listed on the approval letter to cvdl@health.vic.gov.au.

The use of each dataset involved in a data linkage project must be approved by the relevant Data Custodian.

Click here for more information on the Data Custodian’s role.

For datasets held by the Victorian Government

The CVDL Client services team will communicate and seek Data Custodians’ approval for the use of specific dataset from the Integrated Data Resource in the research project, on your behalf.

  • Data linkage application
  • Research protocol
  • Ethics approval
  • The specific data variables requested
  • Any other supporting information including data flows.

In considering the project, a Data Custodian will consider operational, policy and/or specific legislative requirements.

The CVDL will notify you of the Data Custodian approvals once they have all been received.  Please allow two to four weeks for Data Custodian approvals.

For datasets external to the Victorian Government

Your team will need to arrange Data Custodian approvals for all other data collections.

Please provide evidence of the relevant Data Custodians’ approval for the use of the dataset in the research project.

The CVDL can assist in this process if required.

A Privacy Impact Assessment (PIA) considers the future consequences of a current or proposed action and looks to prevent or minimise any negative impacts on privacy.

Victorian Government Internal projects

Research teams from Department of Health or other government departments are required to complete a Threshold Privacy Assessment (TPA), and if required a full Privacy Impact Assessment on their project.

External projects

The CVDL will undertake a Threshold Privacy Assessment (TPA) and if required a full Privacy Impact Assessment for external research projects. These assessments are completed in conjunction with the researcher, and the Information Sharing and Privacy Unit in the department and may incur a cost.

All external research teams must complete the Department of Health Deed of Acknowledgment and Confidentiality (Deed)

The Deed outlines the terms and conditions of access to the linked data (with signatures from all recipients who will have access to the linked data, and from the authorised representative of the recipient organisation legally responsible for the project).

Researchers should submit the completed Deed to cvdl@health.vic.gov.au.

Once all approvals have been obtained the CVDL will prepare and enable access to the linked data.

How does it work?

  • The CVDL’s Victorian data Access Linkage Trust (VALT), will enable distribution of the linked data within a project-specific secure-based cloud environment Virtual Machine (VM) used by the research team to conduct their analysis.
  • The linked data is held securely in the CVDL’s technical environment, therefore providing higher level of security, and access to high performance computing power suitable for undertaking complex analysis of large datasets.
  • The CVDL will authorise removal of aggregated research results and outputs from the project-specific VM to ensure that privacy and confidentiality requirements are met.

Exemption from using the CVDL’s Virtual Machine applies to the following projects:

  • Consented RCT projects – the CVDL’s Manager will consider sending the Victorian linked data to the researcher’s in-house server or on an Azure server. A copy of the research organisation’s infrastructure security documentation will be assessed and considered
  • When using Commonwealth datasets (MBS/PBS) – the CVDL will consider releasing the Vic linked data to the Secure Unified Research Environment (SURE) platform managed by the Sax Institute.

The release of the linked data outside of the Virtual Machine is also subject to approval from the Department’s data custodians

Western Australia

Please contact WA Department of Health Data Linkage Services WA to discuss your project.

Whether you are applying for a project in Western Australia, or a cross/multi jurisdiction project using Western Australian datasets, it is encouraged that you discuss your project with the WA Information and System Performance Directorate (ISPD) Client Services team at DataServ@health.wa.gov.au before applying.

Please visit the Data Linkage Services WA website for information about

Contact the Research Governance Office at DoH.RGO@health.wa.gov.au to enquire on all required ethical approvals as well as clarifications on whether a Data Transfer Agreement, an ‘Access Request Form’ or ‘Site Specific Assessment Form’ are required for the project.

Create a user log in and project workspace in the Research Governance System (RGS).

The RGS can be accessed through the RGS website: https://rgs.health.wa.gov.au/Pages/Home.aspx.

Complete the New User Sign Up form and submit to the RGS Administrator for approval.

If you are not a WA Health employee, you will also need to provide a local WA Health contact in the form to verify the user login request (this can be the relevant ISPD Client Services Request Coordinator). When logged on to the RGS, researchers will be required to complete a Declaration of Confidentiality.

There are a set of mandatory forms and documents which must be completed for all projects, and a set of forms that are only required in certain circumstances.

  • PHRN application form for data (PHRN website)
  • Data management plan (Department of Health Data Linkage Website)
  • A variable list for each data collection in your project (Department of Health Data Linkage Website)
  • Data services form including cohort specifications, linkage, geocoding (Department of Health Data Linkage Website)

Information on the variable lists and other relevant additional forms for WA Department of Health data including extraction form, linkage form, data management plan, geocoding, family connections, derived Aboriginal and Torres Strait Islander Status Flags can be accessed from: https://www.datalinkage-wa.org.au/resources/application-forms/
If you need help, you can contact the ISPD Client Services Team.

Submit a draft application for a feasibility assessment

This stage allows the Data Linkage Unit and Data Custodians to review your application in detail and provide quality advice in relation to the data requested.

Draft applications should be submitted via email to dataservices@health.wa.gov.au and at a minimum include:

  • Application for data form
  • Data management plan
  • Dataset variable lists for any datasets requested
  • Applications for linked data must also include Data services forms (linkage form, extraction form etc.)

The ISPD Client Services team will work with Data Custodians, Data Linkage and Data Engineering teams within the Department of Health on your behalf to identify any issues and suggest changes, where required, to progress your application.

The review process is iterative and may require several revisions and resubmissions of the application.

Once the consolidated feedback from the ISPD Client Services (from data custodians and relevant teams) has been addressed, ISPD Client Services will provide you with a data linkage feasibility letter indicating that your project has been deemed technically feasible and has in-principle support from the Data Custodians.

Submit your letter of feasibility, application documents and other supporting documents to the appropriate ethics committee.

After receiving feasibility from Data Custodians, a formal ethics application can be submitted to the WA Department of Health Human Research Ethics Committee (HREC).

Researchers are required to use the RGS to submit an ethics application to WA Department of Health Human Research Ethics Committee (HREC).

The following documents should be submitted to the Department of Health WA HREC:

  • WA Health Ethics Application form (WAHEAF) or Health Research Ethics Application (HREA) form with the Western Australian Specific Module (WASM) attached.
  • Final version of Application for Data, Data Management Plan, Data Services Forms and Variable Lists
  • Feasibility Letter (obtained from ISPD)
  • Copies of any supporting documentation. For example, letters to participants, participation information sheets, consent forms, information about data collections from outside of the Department of Health.
  • Copies of documentation regarding approval from any other Human Research Ethics Committee.
  • Declaration of Confidentiality for all researchers involved in the project (completed in the RGS system)

Contact Research Governance Office at DoH.RGO@health.wa.gov.au (if required) for further queries on required ethical approvals, Data Transfer Agreement, Access Request Form or Site-Specific Assessment Form.

Once your HREC application is approved, please notify ISPD Client Services and send a copy of the approval letter and all documents listed on the approval letter to DataServ@health.wa.gov.au.

The use of each dataset involved in a data linkage project must be formally approved by the relevant Data Custodian following receipt of ethical approval from the relevant HREC.

Once a project has ethical approval from the Department of Health HREC, ISPD Client Services will coordinate formal Data Custodian approval. It is your responsibility as the researcher to notify ISPD Client Services when your project has received ethical approval.

Lodge your final Application for Data (as approved by the Department of Health WA HREC) to the ISPD Client Services Team at DataServ@health.wa.gov.au.

This submission should include:

  • Signed Application for Data form (as approved by the Department of Health WA HREC)
  • ISPD Client Services forms
  • Variable lists for all data collections
  • the Department of Health WA HREC approval letter
  • Any other ethics approval letters
  • Research protocol (if available)
  • Participant Information and Consent Information (if applicable)
  • Other supporting documentation

For assistance with lodging your formal application, please contact ISPD Client Services at DataServ@health.wa.gov.au.

The ISPD Client Services Team will request formal approval of the data application from all relevant Data Custodians.

ISPD Client Services team will notify you once all approvals have been obtained, including advice to engage with RGO regarding research governance approval application requirements.

All research conducted using linked data must undergo a research governance review.

The governance review is a separate process to the ethical and scientific review. A project must have ethical approval and formal data custodian approval before the submission of application for governance review. Applicants are advised to engage with RGO while awaiting ethical and formal data custodian approvals to be thoroughly informed on the requirements for governance approval.  

Upon receipt of Human Research Ethics Committee (HREC) and formal data custodian approvals, submit applications for governance review with the Research Governance Office (RGO) via Research Governance System (RGS).

All applications for research governance review must be submitted via the RGS.

Applications must include either:

  • a Site Specific Assessment (SSA) Form and supporting documentation: for projects conducting an intervention at a site or sites under the jurisdiction of the Department of Health WA HREC or if a project will require access to physical resources or staff
  • within the Department of Health WA HREC and/or its auspices; or
    an Access Request Form and supporting documentation: for projects requiring access to participants, their tissue or their data

The WA Department of Health teams will coordinate linkage work for the project.

The ISPD Client Services team will release the requested data once HREC, Data Custodian and Research Governance approvals are obtained.

Data will be released to the researcher via secure online file transfer or access data via an e-Research platform.

Cross and multi-jurisdiction

The diagram below describes the steps involved in gaining approval to access cross and/or multi-jurisdiction data.

Complete the free, Online Researcher Training.

Review dataset and variable information on the PHRN Metadata Platform.

Contact the PHRN Coordinator Client Services to discuss your research project.

Register to use the OAS as a researcher, go to https://oas.phrn.org.au and ‘Sign up now’

  • Sign in to the OAS and create a Quote or Expression of Interest
  • On the PHRN OAS home page press ‘Create’
  • On the Summary page select ‘Quote’ or ‘Expression of Interest’ from the ‘Application type’ drop down menu
  • Populate mandatory fields and submit
  • Press ‘Validate’ and the mandatory fields to complete will be highlighted
  • Complete the mandatory fields as required and remember to press ‘Save’ after populating fields
  • Once completed press ‘Submit’

Don’t hesitate to contact PHRN Coordinator Client Services regarding any issues or queries about the OAS.

The PHRN Coordinator Client Services will coordinate review of the Quote or Expression of Interest by the jurisdictional data linkage units involved in the project.

Quotes and coordinated feedback will be uploaded to the PHRN OAS and/or emailed to the Principal Investigator and Contact Person.

Respond to any suggested changes/clarifications requested by the PHRN Coordinator Client Services and the jurisdictional data linkage units. This may include:

  • Revising the OAS application form
  • Completing additional jurisdictional-specific forms

The OAS application form may go back and forth between Client Services and Researcher Review until jurisdictional data linkage units deem the application feasible and acceptable.

Once the Expression of Interest (design) phase of the project is complete itwill be converted to an Application in the OAS.

In most instances the data linkage units will liaise with the relevant data custodians and seek review and approval of the Application on your behalf.

You may be required to complete additional jurisdiction specific forms to accompany the OAS Application for Data Custodian review.

You may also need to arrange data custodian review and approval for some data collections.

The Coordinator Client Services and data linkage units will provide guidance on this.

In most instances researchers are encouraged to apply for ethics approval after data custodian approval is received.

You may be required to obtain multiple ethics approvals. The Coordinator Client Services and data linkage units will provide guidance on this.

Once all approvals (data custodian, ethics, and any other approvals required) for each jurisdiction are in place, the Application will be given Final approval.

What makes a good application?

This is an overview of the common elements in all data application processes. For a more detailed description of the application process relevant to your project, review the material in the ‘Jurisdiction-based processes’ section and visit the website of the Data Linkage Unit/s (DLU) that will be linking the data. 

A list of the DLUs, the jurisdictions they cover, and their website addresses is available here.

  • Aims and objectives: Provide clear aims and objectives which reflect the time frame, datasets, and variables requested.
  • Outcomes for analysis: Be specific of the outcomes that will be analysed from the data available in the datasets being requested.

Describe

  • The cohort group/s (cohort/case, control/comparison) and how, and by who, the group/s are being selected (e.g. study recruitment, cohort provided for linkage, selection from administrative dataset)
  • The data you are requesting for each cohort group including any index events, look back and follow up periods, or other restrictions to the data flow, including provision of data for linkage and role separation if applicable.
  • Transfers: Describe in point form all transfers of personal identifiers and/or content data between data custodians, linkage unit/s, secure access environments, and researchers.
  • Separation: When creating the data flow consider the separation principle and role separation, e.g. that the research team data manager/study data custodian cannot also have access to the linked administrative data.

Contact Client Services for help.

  • Include all researchers who will be involved in the data linkage project, including all those who will require access to the linked data.
  • Ensure all researchers are listed on Human Research Ethics Application/s.

Detailed Cohort Description: Provide a detailed and concise description of how the cohort group/s are to be selected.

Cohort selection: DLUs can select cohort group/s from administrative datasets.

Selection criteria: Cohort selection can be by demographic characteristics (e.g. year of birth, sex) location (e.g. postcodes, SEIFA), clinical outcomes or characteristics (e.g. ICD-10 codes).

Cohort size: Provide an estimate of the anticipated number of individuals in the cohort group/s broken down by jurisdiction, if applicable.

Linkage variables: If you are providing your own research cohort, include details of the linkage variables which will be provided to the jurisdictions performing data linkage. Variables that produce the highest quality linkage are: full name, sex, date of birth, and address.

List all datasets: Include all datasets that you are requesting to be linked. This should include both any research datasets that will be used in conjunction with the linked data. For details on commonly linked datasets available for research, refer to the Metadata Platform. If the dataset you are interested in is not listed there, please contact the relevant Client Services team for assistance.

Additional information: Provide details on any other information that will be analysed alongside the linked administrative data for your study cohort(s).

Date range for each dataset: Specify the required date range for each dataset, including any look-back or follow-up periods needed for your study.

Multiple data extractions: If you are requesting more than one data extraction, please outline the requested timing for access to the data.

Refers to the practice of consumer and community participation in all stages of the research process. For example, the central role of consumers and community members in the planning, design, and dissemination of results of research projects.

Explain how you will provide feedback about your research findings to consumers/community members beyond peer-review publications and conferences. Other ways that consumers could be informed about the results of your study include speaking at consumer events, being interviewed for a radio program, or publishing an article in the Consumers Health Forum of Australia magazine.

Refer to the following:

Please list the risks and benefits to the community and explain how the benefits outweigh the risk to study participants.

The National Statement defines risk as a potential for harms, discomforts and/or inconvenience for participants and/or others. It involves:

  • the likelihood that a harm (or discomfort or inconvenience) will occur; and
  • the severity of the harm, including its consequences.

Risk of harm or discomfort can apply to individual research participants, groups or communities, as well as to non-participants such as family members. Risk can be associated with the conduct of research or the proposed outcomes of the research.

The most common risk associated with data linkage is the risk to privacy. The seriousness of the risks associated with the use of personal information will be affected by the degree of identifiability of the information. According to the National Statement on Ethical Conduct in Human Research (2023), identifiability exists on a continuum. 

Researchers need to consider how likely it is that the identity of individuals can be ascertained from the information involved in a project. Element 4: Collection, Use and Management of Data and Information contained in the National Statement on Ethical Conduct in Human Research (2023) addresses ethical issues related to generation, collection, access, use, analysis, disclosure, storage, retention, disposal, sharing and re-use of data or information.


Researchers should also be guided by information compiled by Office of the Australian Information Commissioner and its state and territory equivalents, and the Australian Bureau of Statistics, in tandem with the National Statement on Ethical Conduct in Human Research (2023).

Develop and describe a security plan for the protection of the data to eliminate, minimise or manage risks associated with data linkage projects.

The security plan should specify the measures taken to ensure the security of information collected for, used in, or generated by this project from misuse, loss, or unauthorised access during and after the research project.

Researchers should incorporate into their data security plan any standards, guidelines and policies on security specified by their organisations or the data custodians from which they are requesting data. Researchers will also need to be aware of relevant legislation that imposes obligations in relation to personal information security. The security plan must address elements including:

  • personnel security controls: this includes limiting access to only those people assessed to be suitable and whose work responsibilities specifically require them to access these resources
  • administrative security controls: consists of approved written policies, procedures, standards, guidelines, security training, risk assessments and external reviews
  • protection of identity: such as the separation of identifying information and content information and statistical disclosure control in publication of results
  • physical security: physical barriers should be in place to prevent access by unauthorised people
  • technological security: this includes password protection, encryption, firewalls, secure remote access laboratories and the use of stand-alone computers.

Transparent and secure arrangements should be made for the retention and final destruction of the data after the project is complete. The following must be specified:

  • the length of time access to the data is required
  • how long the data will be stored after the completion of the project (data retention period)
  • the reason for the data retention period/dates
  • how the data, in all forms, will be disposed.

Researchers may apply through the data linkage unit and relevant Human Research Ethics Committees (HRECs) for an extension to the data retention expiry date if required.

Top tips when submitting an application

It’s crucial that your application is well planned. This means having all required documents, a sound study design and secure data storage protocols early in the application process. 
Research the application process before you start and be sure to speak with the relevant data linkage unit or units. Having a clear understanding of the different roles and responsibilities – including your own – will save time later.

Those reviewing your application might not be experts in your field, so use plain and simple language to accurately communicate your study goals, design, and management plans.

When requesting data, be specific and only request the data you need, to answer your research questions.

You’ll need to submit numerous documents as part of your application, so make sure they’re all consistent and up to date, as your data linkage unit will require the most recent versions of every document. Ensure you maintain good version control across the application process.

You’ll need to have secure data storage arrangements and document these details in your application.

Your data linkage unit is there to help, so engage with them early and often. They can guide you through the application and data linkage process, but they’ll also have questions of their own, so it’s important to maintain regular contact.