1. Presenter Disclosure Information Moira Kapral Challenges and Opportunities in Linking Administrative Claims Data with Stroke Registry Data FINANCIAL DISCLOSURE: None UNLABELED/UNAPPROVED USES DISCLOSURE: None

2. Challenges and opportunities in linking administrative claims data with registry data: the Registry of the Canadian Stroke Network Moira K. Kapral MD, MSc, FRCPC May 2010

3. Overview Description of the Registry of the Canadian Stroke Network (RCSN) Administrative databases available for linkage Linkage process Advantages and disadvantages of linking registry to administrative data

4. Ontario, Canada Canada's largest province Population 13 million Urban and rural Ethnically diverse Universal health coverage with single payer

5. Ontario Stroke System Regionalized stroke care Designated stroke centres Transfer and bypass protocols Funded by Ministry of Health Part of a nationwide stroke strategy Requirement for measurement of monitoring of the quality of stroke care delivery

6. Evaluation of the provincial stroke strategy Mandate for reporting regional performance on key stroke quality indicators 23 indicators including –Thrombolysis –Neuroimaging –Stroke unit care –Carotid imaging –Antithrombotic therapy –Risk factor modification Need for high-quality clinical database

7. Registry of the Canadian Stroke Network Clinical database founded in 2001 Patients with acute stroke or transient ischemic attack admitted to hospital or seen in the ED of acute care institutions Four phases with varying methodology Funded by the Canadian Stroke Network and the Ontario Ministry of Health and Long-Term Care www.rcsn.org

8. Registry of the CSN Emergency Department Data Discharge Data Administrative Data -Hospitalizations-Mortality -Physician Services -Provincial Drug Formulary Core Database Entry Criteria: ED diagnosis of stroke/TIA onset  2 weeks of hospital visit EMS Data Hospital Admission Data

9. Data collected Demographics Pre-hospital/EMS and emergency department care Stroke data – type, subtype, severity, scales In-hospital interventions, consultations, complications Medications – prehospital, during admission, at discharge Investigations Disposition

10. Methodology laptop computer with custom software for data entry electronic transfer of data to coordinating centre web-based module also in use (SPIRIT)

11. Intelligent Data Entry Improves Data Quality only appropriate fields appear (if … then “pop-ups”) few text fields (check boxes or choice fields) range checks logic checks – e.g. only correct sequence allowed data completeness checks double entry of critical fields display of time intervals, age for reality checks

12. Characteristics of a high quality clinical database completeness of recruitment completeness of data use of explicit definitions of variables data validation Black N, Barker M and Payne M. BMJ 328:1478, 2004

13. Data Transfer

14. Institute for Clinical Evaluative Sciences (ICES) Established by provincial government to perform research related to equity, access and quality of health care Administrative data housed there by special agreement Strict data security measures

15. RCSN phases 1 and 2: 2001-2003 21 stroke centres across Canada Consent-based with 6-month follow-up interviews for functional status and quality of life Problems with consent led to biased sample

17. RCSN “Prescribed” in PHIPA 2004 The RCSN is one of only four registries in Ontario that have been granted 'prescription' in the regulations of the Ministry of Health and Long-Term Care under s.39(1)(c )of the Personal Health Information Privacy Act 2004. RCSN collects data without consent, “for the purposes of facilitating or improving the provision of health care” RCSN is the primary means of monitoring and evaluating acute stroke care and outcomes in Ontario

18. RCSN Phase 3: 2003 onwards Data collected without consent, “for the purposes of facilitating or improving the provision of health care” All patients at 11 Ontario stroke centres (core RCSN) –N > 40,000 Population-based audit (RCSN Ontario Stroke Audit) –15-20% of all Ontario stroke cases at all 150 hospitals (n~5,000/year) Patients at secondary prevention clinics Clinics Stroke centers Province-wide audit

20. Data Security laptop computers use finger print readers for password protection data encrypted using BestCrypt ® software personal patient information stripped before data sent to ICES (encrypted health card number sent separately) encrypted data uploaded to ICES by direct unpublished telephone line data kept on a secure server without connections to Internet or Intranet ICES has physical security barriers data security and privacy policies

21. www.ices.on.ca  Investigative Reports

22. Marked variations in tPA by hospital type, 2002/03 and 2004/05

23. Regional variation in stroke unit admissions Overall rate 18.4%

24. Publications

25. Why link registry to administrative data?

26. Rationale for linkage to administrative data RCSN stroke cohort Follow up for readmissions, medications, deaths Characterize based on geographic and area factors Pre-stroke conditions, care, drugs

27. Advantages of linked registry and administrative data Registry creates well-characterized cohort of stroke patients, with detailed baseline clinical data Long-term follow up through administrative data –Less expensive than clinical follow up –Minimal loss to follow up For evaluation of stroke systems and regionalized care, permits evaluation of association between interventions and outcomes (mortality, readmissions, patterns of care)

28. DatabaseVariables Registered Persons/Vital Statistics Mortality CIHI Discharge Abstract DB Hospital separations CIHI National Ambulatory Care Emergency department and ambulatory visits Drug Benefits DatabasePrescription claims for those aged > 65 Canada CensusArea-level income, education Physician ClaimsOutpatient visits, procedures Population-based, comprehensive, validated Administrative data sources in Ontario

29. Process for linkages Need unique patient identifier: health card number Considered most sensitive piece of personal health information – need stringent data security procedures Health card number collected in RCSN database Not transferred with other data; sent on separate disc to specific data custodian at ICES Scrambled to create a new unique ID number; kept on a separate server with no connection to Internet in an area with restricted access

30. Challenges in using linked data Collection of unique patient identifier necessitates stringent, time-consuming and expensive data security measures –Development of protocols and procedures –Personnel to implement –Programming and software –Security of data facility Cannot export or share linked dataset

31. Challenges in using administrative data Population-based data sources not always available Not all variables of interest available in existing databases –Functional status, quality of life, laboratory data, biomarkers, genetic tests Coding/miscoding Claims may not reflect reality Experience required for proper use and interpretation

32. Conclusions Linked registry and administrative data ideal for studying both processes and outcomes of stroke care Should be considered for jurisdictions that are establishing regionalized systems of stroke care, to allow evaluation of return on investment Main challenges are –Availability of appropriate databases –Data security –Expertise in linkages and analyses Worthwhile investment for policy-makers and government

33. Advertisement for RCSN database AVAILABLE TO YOU for research projects Analyses done on-site at ICES and funded by RCSN grant Need to collaborate with RCSN investigator Project request forms available at www.rcsn.org

34. Thanks and questions