Transcript Madden - ABS Data Linkage Forum Nov 2008.ppt

Statistical Data Linkage:
A Virtuous Combination of
Interests
Richard Madden
Professor of Health Statistics
Director, National Centre for Classification in Health
Chair, NSW Population Health and Cancer Institute Ethics Committee
Strengths
Strong research tool
Avoid release of identified data
Reduce need for longitudinal studies
Systematic approaches
• WA, NSW, NDI, …
• Standardise application processes
• Ease ethics approval burden and delay
BUT
• Commonwealth largely disengaged
• Limited resources
But no linked up hospital statistics!
• National Disability services statistics routinely
link users of services using HACC identifier
BUT
• States do not publish person based hospital inpatient statistics. And so no national report is
possible
• RECOMMENDATION 1
Data Custodians
• Australia’s health information system
depends on trust in custodians
• Must protect data subjects’ interests
• Researchers must recognise custodian
responsibilities: it is in their interests!
Custodians: Releasing data
• Must follow good practice in releasing
identifiable data
BUT
• No incentive to provide data
• Whimsical
Obligation for Custodians
• Should provide data for ethically
acceptable and scientifically valid projects
• Should be included in National Health
Information Agreement
• RECOMMENDATION 2
ABS and Data Linkage
• RADL was breakthrough initiative in
response to “Identifiability” crisis
• Census Enhancement program a brave
initiative
• Great opportunity to lead: justice,
education, cross-sectoral
Privacy legislation, ethics committees
• Room for increased consistency, simpler
processes, more mutual recognition
BUT
• Both are essential for community
acceptance
• Researchers’ needs are well recognised
Linkage with Registers
• Registers should NOT release identified data
without consent to researchers
• Register custodians should link their data with
other data sets, releasing linked data sets
without identifiers, AND/OR
• Provide their data under formal arrangements
to State linkage systems, AIHW or ABS
• Need flexible arrangements for researchers to
work inside Registries
Linkage with Historical Data Sets
• A common application
• No consent
• Common bid: too hard, too upsetting, too many
dead
• Response: respect the data subjects: try to
contact, contact representatives, advertise, …
• After a reasonable effort, EC can approve
(S95A)
Conclusion
Need a mutually supportive system:
• Data custodians
• Researchers
• Regulators (ECs, privacy bodies)
Australia well placed to be a world leader in
data linkage