About Institute for Clinical Evaluative Sciences (ICES)

1. Linking Citizenship and Immigration Canada (CIC) data with administrative data to examine health and health services of immigrants in Ontario16th National Metropolis Conference Partnering for Success: Facilitating Integration and Inclusion Gatineau, QuebecKarey IronMarch 15, 2014 Statistics Canada 2014

2. About Institute for Clinical Evaluative Sciences(ICES) • Non-profit with independent Board • Funded primarily by the Ontario Ministry of Health, special initiative funds and peer reviewed grants • ~150 faculty and staff members • Produce population-based health services science in areas such as health system performance, primary care, drug safety and effectiveness, mental health, chronic diseases • Research has appeared in atlases, investigative reports, and peer-reviewed journals

3. ICES uses de-identified and linked Ontario population-based admin data to generate evidence that stimulates improvements in health and health care for Ontario Ontario population= 13.5 M ICESCentral - Toronto ICESQueens – Kingston ICES Ottawa – Ottawa ICES@UofT– Toronto downtown ICES Western – London Under development: McMaster - Hamilton In negotiation: Lakehead – Thunder Bay ICES sites across Ontario

4. ICES Data Repository Individual level: reflects people and their health care experiencesPopulation based and longitudinal: health records of all people since 1991 who had a health card Breadth of services: most publicly funded services De-identified: encrypted health card number (ICES key number) Linkable through IKN: continuity of care and cohort creation Easy to use: SAS files on UNIXSecure and Privacy Protected: IPC approved

5. ICES Data Repository: Individual records,De-identifiedand Linkable People & Geography (IKN) Unique ICES Key Number encrypted HCN People in Ontario since 1985 Unique individual anonymous # IKN Postal CodeConversion/Geographical Population Estimates Canada Census Profiles Death register

6. ICES Data Repository: Individual level, De-identifiedand Linkable IKN=unique algorithm based on Ontario health card number People & Geography (IKN) Health Services (IKN) Provider/ Facilities Physician claims People in Ontario since 1985 Unique individual anonymous # IKN Physicians Hospitals Complex care Long-term care homes Home care In-pt hospital discharge abstracts Emergency and ambulatory care abstracts Prescription drug claims (65 and over) Postal CodeConversion/Geographical Real-time (IKN) Home care claims Population Estimates *HOBIC *Peritoneal Dialysis Rehab claims Canada Census Profiles Long-term care visits Death register In-patient mental health data

7. ICES Data Repository: De-identifiedand Linkable IKN=unique algorithm based on Ontario health card number People & Geography (IKN) Health Services (IKN) Provider/ Facilities *Special Collections (IKN) Physician claims Derived chronic conditions (IKN) People in Ontario since 1985 Unique individual anonymous # IKN Physicians Hospitals Complex care Long-term care homes Home care Registries (Cancer, Stoke, CCN, *Birth outcomes) In-pt hospital discharge abstracts (using linked data) Diabetes Hypertension COPD CHF AMI Asthma IBD Federal immigration register Emergency and ambulatory care abstracts *First Nation Metis Prescription drug claims (65 and over) Postal CodeConversion/Geographical Real-time (IKN) Home care claims *HIV Population Estimates *HOBIC *Peritoneal Dialysis Rehab claims Developmental Disabilities Canada Census Profiles Long-term care visits Death register Primary Collected Data & Other!!! (IKN) In-patient mental health data Presentation Title

8. ICES Data Repository: De-identifiedand Linkable IKN=unique algorithm based on Ontario health card number People & Geography (IKN) Health Services (IKN) Provider/ Facilities Special Collections (IKN) Physician claims Derived chronic conditions (IKN) People in Ontario since 1985 Unique individual anonymous # IKN Physicians Hospitals Complex care Long-term care homes Home care Registries (Cancer, Stoke, CCN, *Birth outcomes) In-pt hospital discharge abstracts (using linked data) Diabetes Hypertension COPD CHF AMI Asthma IBD Federal immigration register Emergency and ambulatory care abstracts *First Nation Metis Prescription drug claims (65 and over) Postal CodeConversion/Geographical Real-time (IKN) Home care claims *HIV Population Estimates *HOBIC *Peritoneal Dialysis Rehab claims Developmental Disabilities Canada Census Profiles Long-term care visits Linked Data set Death register Primary Collected Data & Other!!! (IKN) In-patient mental health data Presentation Title

9. What advantage does a linked data set provide? • “Each person in the world creates a book of life.  This book starts with birth and ends with death.  Its pages are made of the records of principal events in life. Record linkage is the name given to the process of assembling the pages into a volume.” • (Dunn HL.  Am J Pub Health 1946;36:1412)

10. Examples of Questions we an Answer Using Linked ICES Data --- Imagine linking immigration lens Primary care: • Is primary care accessed equitably across populations and across geographic areas in Ontario? Mental health: • What is the unmet health care need of marginalized populations? • What is the supply and demand of psychiatrists compared to other specialists? Cancer care: • Are cancer screening services, such as mammography, being accessed by all populations? Chronic conditions: • What social factors are associated with chronic conditions? How many people have more than one chronic condition and how does this affect care and outcomes? Health system performance: • What initiatives can be developed for improving quality of care and safety?

11. ICES Privacy • ICES is designated as a prescribed entity under Ontario PHIPA 2004 • (s. 45[1] and O. Reg 329/04 section 18[1]) Health information custodians (HICs) may disclose personal health information (PHI) to a prescribed entity (ICES) for purposes of: • managing the health system • allocation of resources • evaluation and monitoring • planning for all or part of the health system • HICs and other data partners may also disclose data to ICES for research – REB approved, s.44 PHIPA

12. Project approval for each project using ICES data… • A Privacy Impact Assessment (PIA) is completed for all ICES projects and approved by the ICES Privacy Office • All ICES projects undergo expedited REB review – Sunnybrook REB Office • Access to record level data is restricted to trained ICES analysts (with signed confidentiality agreements) • ICES security and privacy SOP’s are reviewed and approved by the Information and Privacy Commissioner every three years

13. Data Partners > 200 Data Sharing Agreements last year • Health sector:Ministry of Health and Long Term Care – most admin data Cancer Care Ontario; Cardiac Care Network POGO; BORN CIHI Ontario Association of CCACs *Ontario Coroner’s Office Hospitals, physicians, researchers Public Health Ontario Children’s Mental Health – Kinark *Non-health sector:Ministry of Community and Social Services; Child and Youth Services; Education; Transportation; EnvironmentFederal: *Citizenship and Immigration Canada *Statistics Canada *Metis Nation (Ontario) *AANDC – Federal First Nations Register*controlled/restricted data

14. Data Integration, Matching and De-identification ICES Data (Linkage via ICES Key Number) ICES Data IKN IKN ICES Registered Persons Database + IKN Other ICES datasets (anonymous) Ontario health admin data (anonymous) Partner’s Data (anonymous) Partner’s Data g Project proposal for linked data set ICES ICES Key Number (IKN) assigned to matched records De-identification Health card # First name Last name Date of birth Sex Postal code Raw data c f b d h Privacy Impact Assessment a e i Research Ethics Approval Disaster recovery vault Virtual data shredder j Linked, de-identified dataset for analysis

15. Data Matching and De-identification Quality Challenges The original data - completeness/quality/accuracy of matching variables – all data require review Expertise: Automatch … then intense data manipulation techniques Timeliness: first pass yields 75% match rate if good data; rest manual record comparison – could take a REALLY long time Generalizability: Comparison of characteristics of people whose records match and can be linked vs those that don’t

16. CIC and ICES Data Partnership In 2011, agreement signed for annual data extract to ICES Purpose: *Expand the knowledge-base of immigrant health services use and health in Ontario for policy development and health services planning *Expand knowledge of the linkage between federal immigration data and provincial health data – pilot for other provinces *Federal provincial collaboration

17. Activities and controls: *Privacy impact assessment *Comprehensive & innovative data sharing agreement – collaboration built into the agreement: CIC – ICES workshop *Every project vetted by trusted ICES scientist known to CIC *Notification/reporting to CIC for projects being undertaken by ICES *Internal data access controls for ICES analysts *CIC is notified of every project and receives copies of all reports at draft and/or 30 days prior to publication; opportunity for scientific commentary and feedback *Data quality feedback loop in place – CIC/ICES data analysts are in contact (data feedback activity written into the DSA) Presentation Title

18. Preliminary CIC data integration at ICES Overall, an 86% match rate to Registered Persons Data base at ICES: ICES Key Number assigned Slide: Mahmoud Azimaee, ICES Health Data Lead

19. Preliminary CIC data integration at ICES Slide: Mahmoud Azimaee – ICES Health Data Lead

20. Preliminary CIC data integration at ICES Slide: Mahmoud Azimaee – ICES Health Data Lead

21. Number of refugee and non-refugee children and youth ages <19 years landed in Ontario, 1985 to 2010 Source: Citizenship and Immigration Canada, Ontario portion; Matched data file at ICES

22. First Annual CIC ICES Workshop - Faculty Club, University of Toronto May 9 2013

23. ICES – Some CIC Data Users Jack Tu, Astrid Guttmann, Simon Hollands, Marcelo Urquia, Joel Ray, Doug Manuel, Marisa Creatore From Left to right, back to front: Reza Rezai, Laura Maclagan, Mike Campetelli, Ashif Kachra, Julie Yang, Karey Iron, Saba Khan, Marian Vermeulen, Kelvin Lam, Mahmoud Azimaee, Anna Durbin, Sima Gandhi.

24. Risk of cerebral palsy by world region of origin to non-immigrants Source: Joel G Ray, Donald A Redelmeier, Marcelo L. Urquia, Astrid Guttmann, Sarah D McDonald, Marian J Vermeulen; Work in Progress 2014

25. ICES projects accessing CIC data to date Diabetes prevalence differs by region of birth: South Asians at 3-4X higher risk of diabetes than Western Europeans Source: Creatore et al., CMAJ, 2010. *After controlling for age, income, education, visa category and time since arrival Presentation Title

26. Source: Creatore et al., CMAJ, 2010.

27. Risk of Gestational Diabetes Among Immigrant Women Ray et al. Epidemiology; Volume 22, Number 6, November 2011

28. Individual Cardiovascular EventsSource: Tu, J et al. American Heart Association Meeting, Nov 2013, Dallas, Texas. Under peer review, Jan 2014 *Age-/sex-standardized to the 2006 Ontario census population Presentation Title

29. INDICATOR: Prevalence of youth with mental health and addictions services use in provincial correctional centres (per 10,000 Ontario youth general population) Data sources: Registered Persons Database, Ontario Health Insurance Plan Claims (OHIP), Citizenship and Immigration Canada Source: DRAFT - Ontario Child and Youth Mental Health Baseline Scorecard 2014 29

30. Some ICES projects linking CIC data with ICES data

31. Questions? Comments? Ideas?