Post on 31-Jul-2020
Cross-Jurisdiction linkage and strategic
directions for data linkage in Australia
Dr Merran Smith, Chief Executive, PHRN
Presentation at Data Linkage Symposium
Brisbane, 8 November 2016
Overview
� PHRN explained
� Cross-jurisdiction (XJ) data linkage
� Strategic directions for data linkage
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PHRN explained
� A national collaborative research infrastructure network led by UWA
� Support facilities that link and provide access to linked population data
� Data mainly from Australian, state and territory government agencies
� Focus is on health but other human services data is included
Our beginning
� Australian Government funds 27 national capabilities/facilities via the National Collaborative Research Infrastructure Strategy (NCRIS)
� PHRN is one of these capabilities
� We started in mid-2009
� Queensland was involved from the start
Funding to June 2017
Source Total ($A)
Australia Government 46.6m
Other cash contributions * 23.0m
In-kind contributions * 45.4m
Total Investment 115.0m
* Contributions are from state and territory governments,
government agencies, universities and institutes
PHRN facilities
� PHRN is a distributed system
� We currently support:
� Five state data linkage units (incl QRLG)
� Two national data linkage units
� A secure remote access data lab (SURE)
� An Online Application System and secure data exchange
Service locations
Linked data assets
Figure: Years of linked Hospital Admitted Patient data by jurisdiction at April 2016
Current status
�All states and territories now have enduring data linkage keys
� Enduring linkage for some Australian government data
�Australian infrastructure is of international significance
Cross-jurisdiction data linkage
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XJDL explained
� Linkage of data from individuals that is held in different jurisdictions eg
� Qld and NSW hospital discharge data
� Qld hospital discharge and C’wlth PBS data
� XJDL is vitally important because:
� Health data is held in different jurisdictions egsome in C’wlth, some in states/territories
� Australians are mobile
Data across the lifespan
CRADLE
Birth Records/
Perinatal Data
States/Territories
GP Records
Commonwealth
Hospital Records
States/Territories
Prescriptions
Data (PBS)
Commonwealth
Veterans’ Affairs/
Ageing Data
Commonwealth
Death Records
States/Territories
Disease Registries
States/Territories
Education data
Commonwealth
Medical Benefits
Data (MBS)
Commonwealth
Education Data
States/Territories
GRAVE
Progress with XJDL
� XJDL is generally done on a create and
destroy basis
� PHRN has funded several big XJDL projects
� A funded project at AIHW to build enduring
national (XJ) data linkage keys
� These will enable systematic
linkage of C’wlth, state and territory data
Hospital-related deaths
� Project linked 10 years of data from four states (NSW, Qld, SA and WA)
� Included over 44 million records from almost 12 million people
� The study showed the extent of patient movements across state borders
� It also showed the importance of counting deaths after hospital discharge
Patient movements
Jurisdiction of residence pre-move
Note: By definition a mover
had at least 2 hospital stays
over a 5 year period
Spilsbury et al, MJA 2015, 202 (11): 582-586
Childhood immunisation
� Study linked 16 years of data from the ACIR and two states (NSW and WA)
� AIHW did the linkage; data accessed via SURE
� Included over 35 million records from almost 2 million children
� Showed extent of immunisation in high risk children
Birth
registrations
Babies
Disease notifications: 98,000 records
Hospitalisations: 2.1 million records
Emergency visits: 5.7 million records
Vaccinations
Midwife
data
NSW/WAMothers
Deaths
Data sources and linkages
Study cohort
Born 1996-2012
NSW: 1,506,336
WA: 463,137
Total: 1.97 million children
26.9 million records
10,000 records
Childhood immunisation
Access to XJ linked data
� The challenge for cross-jurisdiction projects:
� Projects require multiple approvals (ethics, data custodian, DLU)
� Long delays for approval, linkage and data supply
� The approach:
� Progress mutual acceptance of approvals
� Develop enduring national data linkage keys
� Standardise application processes eg PHRN Online Application System
Online applications
The PHRN Online Application System will allow you to:
� Use the one form for Requests for quotation, Expressions of interest and Applications
� Use the one form to obtain approval from multiple jurisdictions
� Submit your application to multiple jurisdictions simultaneously
� Track the progress of your application and view approvals as they come in
� Share the application with other researchers and manage documents in a central point
For further information, see www.phrn.org.au19
Strategic directions
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Decadal goals
� Innovative infrastructure
� World-leading research
� Advocacy and communications
� Successful collaborations
Focus areas
�National master linkage keys
�Cyber security
�Additional high value data eg primary care
� Improved data access/supply eg via repositories
Conclusion
� Australia has world class linked data
� This is being used for important health and human services research
� There are opportunities to further improve the depth, breadth and use of linked data in Australian
More about PHRN …..
www.phrn.org.au
merran.smith@uwa.edu.au
More information
Any questions?