1. CRICOS No. 00213J Us and them: data linkage from the perspective of custodians and users Angela Watson, Kirsten McKenzie, and Barry Watson International Data Linkage Conference, Perth May 2-4, 2012

2. Road safety A reliance on police data Good information about crash circumstances Under-reporting Injury outcomes Cost and prioritisation The new Australian National Road Safety Strategy 2011-2020 3

3. Road safety Other data sources Patients admitted to hospital Emergency department Ambulance Service Coroner’s Increasing interest in data linkage

4. What needs to be done first? Data quality –“garbage in garbage out” Accessibility Feasibility Is it worthwhile?

5. What needs to be done first? Data quality –“garbage in garbage out” Accessibility Feasibility Is it worthwhile?

6. What needs to be done first? Data quality –“garbage in garbage out” Accessibility Feasibility Which model is most worthwhile?

7. Current study Interviews with custodians, users, & linkage experts Data quality Accessibility Data linkage

8. Accessibility Hierarchy Data custodians “We would only give aggregate data to the media or to the public” “Researchers can get potentially identifiable data if they agree to not report it publicly” “Can’t give potentially identifiable data to any external parties it’s a matter of privacy” Data users “We have our own ethics processes, why is that not enough?” “I understand why some things wouldn’t want to be made public, but I don’t see researchers as the public”

9. Accessibility - Is it just privacy? Interpret Data custodians “So we spend a lot of time trying to explain what the limitations of our data are” “Some researchers just don’t understand the data at all” Data users “I think if you came in fresh and they hadn't seen your name before, they would have question marks.”

10. Accessibility - Is it just privacy? Control Data custodians ???? Data user “If we're doing the work on behalf of them it's an easier process, because they control the outcome”

11. What is data linkage? WA QLD CODES (US) Identifiers All data elements Ad-hoc Routine Extent of data sharing Frequency WA/QLD

12. Benefits of linkage Road safety Validation tool

13. Under-reporting CircumstancesMisclassification Benefits of linkage Road safety

14. Validation tool Under-reporting CircumstancesMisclassification Benefits of linkage Road safety

15. Validation tool Under-reporting CircumstancesMisclassification Benefits of linkage Road safety

16. Add information Without extra burden on collectors SeverityCircumstances Benefits of linkage Road safety

17. Add information Without extra burden on collectors SeverityCircumstances Benefits of linkage Road safety

18. Add information Without extra burden on collectors SeverityCrashPre-crash

19. Add information Without extra burden on collectors SeverityCrashPre-crash Benefits of linkage Road safety

20. Add information Without extra burden on collectors Post-crashCrashPre-crash Benefits of linkage Road safety

21. Crash event Pre-crash Enforcement Traffic & criminal offence history Drugs and alcohol Education Family Health

22. Crash event Pre-crashCrash Enforcement Traffic & criminal offence history Drugs and alcohol Education Family Health Circumstances e.g., speeding, alcohol, fatigue

23. Crash event Pre-crashCrashPost-crash Enforcement Traffic & criminal offence history Drugs and alcohol Education Family Health Circumstances e.g., speeding, alcohol, fatigue Injury severity Injury outcomes Mortality

24. Crash event Pre-crashCrashPost-crash Enforcement Traffic & criminal offence history Drugs and alcohol Education Family Health Circumstances e.g., speeding, alcohol, fatigue Injury severity Injury outcomes Mortality

25. People seem to see the benefit, so why has it still not happened?

26. Barriers to linkage Barriers CapacityPrivacyReportingGovernance Responsibility

27. Barriers to linkage Barriers CapacityPrivacyReportingGovernance Responsibility

28. Barriers to linkage Barriers CapacityPrivacyReportingGovernance Responsibility

29. Barriers to linkage Barriers CapacityPrivacyReportingGovernance Responsibility

30. Barriers to linkage Barriers CapacityPrivacyReportingGovernanceInstigation

31. Summary Accessibility problems may be more than just about privacy Relationships important Different views on linkage –Extent of sharing –Frequency

32. Summary Benefits –Validation tool –Adding information Barriers varied depending on model What next.........

33. PhD Piecing the puzzle together: data quality and linkage in road safety

34. PhD Study 1 Interviews and reviews Quality Accessibility Feasibility Value Study 2 Non-linked data analysis Nature of data Quality Feasibility Value Study 3 Linked data analysis Quality Concordance Feasibility Value

35. Crash event Pre-crashCrashPost-crash Enforcement Traffic & criminal offence history Drugs and alcohol Education Family Health Circumstances e.g., speeding, alcohol, fatigue Injury severity Injury outcomes Mortality PhD One of a thousand post-doc ideas

36. Watch this space!

37. Questions? angela.watson@qut.edu.au Mark your Diaries! International Council on Alcohol, Drugs and Traffic Safety Conference (T2013) 26-29 August 2013, Brisbane