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?