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Statistical Data Linkage: A Virtuous Combination of Interests

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

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Statistical Data Linkage: A Virtuous Combination of Interests

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  1. 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

  2. Strengths Strong research tool Avoid release of identified data Reduce need for longitudinal studies

  3. Systematic approaches • WA, NSW, NDI, … • Standardise application processes • Ease ethics approval burden and delay BUT • Commonwealth largely disengaged • Limited resources

  4. 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 • National Disability services statistics routinely link users of services using HACC identifier BUT • States do not publish person based hospital in-patient statistics. And so no national report is possible • RECOMMENDATION 1

  5. 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!

  6. Custodians: Releasing data • Must follow good practice in releasing identifiable data BUT • No incentive to provide data • Whimsical

  7. Obligation for Custodians • Should provide data for ethically acceptable and scientifically valid projects • Should be included in National Health Information Agreement • RECOMMENDATION 2

  8. 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

  9. 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

  10. 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

  11. 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)

  12. Conclusion Need a mutually supportive system: • Data custodians • Researchers • Regulators (ECs, privacy bodies) Australia well placed to be a world leader in data linkage

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