Icons / Login Created with Sketch.
Icons / User Created with Sketch.

Publishing conditions for research using linked data

Checklist (light) These requirements are in addition to publishing conditions for survey data, and apply to all outputs.

(For users of MatCH Substudy data, additional requirements are provided here.)

Please ensure that you cite linked collections correctly in all text.

The official names for each collection are listed here.

When referring to records generically, please use the term ‘hospital admissions’ records/data (rather than simply ‘hospital’, as emergency department and perinatal records are also sourced from hospitals).

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.

Attention! What are the data custodians looking for?

  • Have the project and authors been approved?
  • Have the data been analysed and interpreted correctly?
  • Are there any privacy or confidentiality issues (identification of individuals, services or small communities; no cell sizes  <5)?
  • Have any statements been made about government organisations (policies, programs, services, activities, funding models etc.)?
  • Have the data sources been correctly acknowledged?
This requirement applies to:

 

 ALL State/Territory Data Collections (i.e. Hospital Admissions, Cancer, Perinatal, and Emergency Department data)

 

Woman with ID card  Department of Veterans Affairs (DVA) sourced R-MBS and/or aged care service data, IF you intend to publish analyses which distinguish DVA clients and/or services

Note that any DVA-specific analyses should be detailed on your EoI, and you should already have DDVA HREC approval and a DVA sponsor for your project, as per the Departments of Defence and Veterans’ Affairs HREC Researcher and Administrative Guidelines (Section 1.67 to 1.73).

Where researchers include DVA health records (MBS or Aged Care) in their analyses simply to ensure complete coverage of the cohort, they do not need pre-publication review.

Attention! It is the author’s responsibility to submit the manuscript to the Data Custodians. To assist you in this process, we will provide you with an email template and the current Custodian email addresses; please notify alswhdatalinkage@uq.edu.au of the datasets used, your EoI number, and attach a draft of your manuscript.

Attention! To avoid confusion, before forwarding draft manuscripts to data custodians, first ensure that the paper actually refers to data from that custodian. While you may have accessed and analysed linked datasets for your project, not all data is necessarily included for publication. Notification and review by the custodian is only required where results specifically include data from their collection, or the dataset has been mentioned in the paper.

Where data from external sources are used, the following acknowledgements should be included:

Attention!  Only include the names of the collections which were actually reported on in your publication.

  For posters and presentations, if there are a large number of acknowledgements and space is limited, you can give a general acknowledgement and  insert this link: https://alswh.org.au/for-data-users/linked-data-overview/linked-data-sources/

ID card   Medicare Benefits Schedule (MBS), Pharmaceutical Benefits Scheme (PBS), and/or Aged Care data:

“The authors acknowledge the Australian Government Department of Health and Aged Care for providing MBS and PBS data, and Aged Care data; and the Australian Institute of Health and Welfare (AIHW) as the integrating authority”.

Woman with ID card  There is an alternative statement where Repatriation-MBS (R-MBS) data or Veterans’ Home Care and Community Nursing data from DVA were also used:

“The authors acknowledge the Australian Government Departments of Health and Aged Care, and Veterans’ Affairs, for providing MBS and PBS data, and Aged Care data; and the Australian Institute of Health and Welfare (AIHW) as the integrating authority”.

Attention!  If you intend to publish analyses which distinguish DVA clients and/or services, further conditions will apply. Please contact Colleen Loos, or refer to Departments of Defence and Veterans’ Affairs HREC Researcher and Administrative Guidelines (Section 1.67 to 1.73).

 National Death Index (NDI) and Cause of Death (COD):

“The authors acknowledge the assistance of the Data Linkage Unit at the Australian Institute of Health and Welfare (AIHW) for undertaking the data linkage to the National Death Index (NDI)”.

 Cancer Registry Data:

“The authors acknowledge the Australian Capital Territory, New South Wales, Northern Territory, Queensland, South Australian, Tasmanian, Victorian, and Western Australian Cancer Registries for providing data, and the Australian Institute of Health and Welfare (AIHW) as the integrating authority.”

 Hospital Admissions, Emergency Department and/or Perinatal Collections:

“The authors acknowledge the following (edit collection names as applicable):

  • The Centre for Health Record Linkage (CHeReL), NSW Ministry of Health and ACT Health, for the NSW Admitted Patients, Emergency Department, and Perinatal Data Collections; and the ACT Admitted Patient Care, Emergency Department, and Maternal Perinatal Data Collections.
  • Queensland Health as the source for Queensland Hospital Admitted Patient, Emergency and Perinatal Data Collections; and the Statistical Analysis and Linkage Unit (Queensland Health) for the provision of data linkage.
  • The Department of Health Western Australia, including the Data Linkage Branch, and the WA Hospital Morbidity and Emergency Department Data Collections, and the Midwives Notification System.
  • SA NT Datalink, SA Health, and Northern Territory Department of Health, for the SA Public Hospital Separations, SA Public Hospital Emergency Department, SA Perinatal Statistics, NT Public Hospital Inpatient Activity, NT Public Hospital Emergency Department, and NT Perinatal Trends Data Collections.
  • The Department of Health Tasmania, and the Tasmanian Data Linkage Unit, for the Public Hospital Admitted Patient Episodes, Tasmanian Emergency Department Presentations, and Perinatal Data Collections.
  • Victorian Department of Health as the source of the Victorian Admitted Episodes Dataset and the Victorian Emergency Minimum Dataset; and the Centre for Victorian Data Linkage (Victorian Department of Health) for the provision of data linkage. Where the VPDC is used please also add the following acknowledgement/ disclaimer: “The authors acknowledge and thank the Consultative Councils Unit and the Consultative Council on Obstetric and Paediatric Mortality and Morbidity (CCOPMM) for the data and support provided to this project. The opinions and conclusions expressed in this paper are those of the authors and may not reflect those of CCOPMM.”

These guides may be helpful in reporting the results of linked data analyses.

Resources 
ALSWH publishing guidelinesPDF
Information requested by journals
ALSWH: List of linked data collections and organisations involved
ALSWH: List of HREC approvals for data linkage
RECORD statement (REporting of studies Conducted using Observational Routinely-collected Data)PDF
GUILD (GUidance for Information about Linking Data sets)Go to web site