1. Institute for Clinical Evaluative Sciences Linking Citizenship and Immigration Canada (CIC) data with administrative data to examine health and health services of immigrants in Ontario 16th National Metropolis Conference Partnering for Success: Facilitating Integration and Inclusion Gatineau, Quebec Karey Iron March 15, 2014 Statistics Canada 2014 1

2. Institute for Clinical Evaluative Sciences 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. Institute for Clinical Evaluative Sciences ICES uses de-identified and linked Ontario population-based admin data to generate evidence that stimulates improvements in health and health care for Ontario ICES sites across 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

4. Institute for Clinical Evaluative Sciences 4 ICES Data Repository Individual level: reflects people and their health care experiences Population 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 UNIX Secure and Privacy Protected: IPC approved

5. Institute for Clinical Evaluative Sciences 5 People & Geography (IKN) Population Estimates Canada Census Profiles Postal Code Conversion/ Geographical ICES Data Repository: Individual records, De-identified and Linkable People in Ontario since 1985 Unique individual anonymous # IKN Death register Unique ICES Key Number encrypted HCN

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

7. Institute for Clinical Evaluative Sciences Presentation Title7 Derived chronic conditions (IKN) People & Geography (IKN) *Special Collections (IKN) Registries (Cancer, Stoke, CCN, *Birth outcomes ) Federal immigration register *First Nation Metis (using linked data) Diabetes Hypertension COPD CHF AMI Asthma IBD Health Services (IKN) Physician claims In-pt hospital discharge abstracts Emergency and ambulatory care abstracts Prescription drug claims (65 and over) Home care claims Rehab claims Long-term care visits In-patient mental health data Provider/ Facilities Physicians Hospitals Complex care Long-term care homes Home care Real-time (IKN) *HOBIC *Peritoneal Dialysis Population Estimates Canada Census Profiles Primary Collected Data & Other!!! (IKN) Postal Code Conversion/ Geographical ICES Data Repository: De-identified and Linkable People in Ontario since 1985 Unique individual anonymous # IKN *HIV Developmental Disabilities Death register IKN=unique algorithm based on Ontario health card number

8. Institute for Clinical Evaluative Sciences Presentation Title8 Derived chronic conditions (IKN) People & Geography (IKN) Special Collections (IKN) Registries (Cancer, Stoke, CCN, *Birth outcomes ) Federal immigration register *First Nation Metis (using linked data) Diabetes Hypertension COPD CHF AMI Asthma IBD Health Services (IKN) Physician claims In-pt hospital discharge abstracts Emergency and ambulatory care abstracts Prescription drug claims (65 and over) Home care claims Rehab claims Long-term care visits In-patient mental health data Provider/ Facilities Physicians Hospitals Complex care Long-term care homes Home care Real-time (IKN) *HOBIC *Peritoneal Dialysis Population Estimates Canada Census Profiles Primary Collected Data & Other!!! (IKN) Postal Code Conversion/ Geographical ICES Data Repository: De-identified and Linkable People in Ontario since 1985 Unique individual anonymous # IKN *HIV Developmental Disabilities Death register IKN=unique algorithm based on Ontario health card number Linked Data set

9. Institute for Clinical Evaluative Sciences What advantage does a linked data set provide? 9 “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. Institute for Clinical Evaluative Sciences 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. Institute for Clinical Evaluative Sciences 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. Institute for Clinical Evaluative Sciences 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. Institute for Clinical Evaluative Sciences 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; Environment Federal: *Citizenship and Immigration Canada *Statistics Canada *Metis Nation (Ontario) *AANDC – Federal First Nations Register *controlled/restricted data

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

15. Institute for Clinical Evaluative Sciences 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. Institute for Clinical Evaluative Sciences 16 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 CIC and ICES Data Partnership

17. Institute for Clinical Evaluative Sciences Presentation Title17 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)

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

19. Institute for Clinical Evaluative Sciences 19 Preliminary CIC data integration at ICES Slide: Mahmoud Azimaee – ICES Health Data Lead

20. Institute for Clinical Evaluative Sciences 20 Preliminary CIC data integration at ICES Slide: Mahmoud Azimaee – ICES Health Data Lead

21. Institute for Clinical Evaluative Sciences 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. Institute for Clinical Evaluative Sciences 22 Welcome, background and agenda Doug Manuel Karey Iron Martha Justus Overview of workshop deliverables Overview of CIC data at ICES – past and presentMarisa Creatore Why CIC data is important to the health of Moms and babiesJoel Ray Incidence of cardiovascular events in immigrants to OntarioJack Tu - Cardiovascular Team Mental Health and Addictions Scorecard and Evaluation Framework - Overview Astrid Guttmann Self-harm and Immigrant Youth Kelvin Lam Gender disparities in perinatal and child health, and maternal well-being associated with maternal country of birth Sima Gandhi Mental Health service use patterns for immigrant groups and long term residents in Ontario – Thesis proposal Anna Durbin Using linked federal and provincial administrative data to understand health and use of health services of immigrants in Ontario Doug Manuel Exploring variation in prenatal genetic screening rates in OntarioMike Campitelli General DiscussionAll Data integration and quality assessmentMahmoud Azimaee Data discussionAll Brainstorming for next year ideasAll Next steps and closeDoug Manuel First Annual CIC ICES Workshop - Faculty Club, University of Toronto May 9 2013

23. Institute for Clinical Evaluative Sciences 23 ICES – Some CIC Data Users 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. Jack Tu, Astrid Guttmann, Simon Hollands, Marcelo Urquia, Joel Ray, Doug Manuel, Marisa Creatore

24. Institute for Clinical Evaluative Sciences 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. Institute for Clinical Evaluative Sciences Presentation Title25 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 *After controlling for age, income, education, visa category and time since arrival Source: Creatore et al., CMAJ, 2010.

26. Institute for Clinical Evaluative Sciences 26 Source: Creatore et al., CMAJ, 2010.

27. Institute for Clinical Evaluative Sciences 27 Risk of gestational diabetes mellitus Odds ratio (95% confidence interval) World region of birth (no. deliveries)No. (%) eventsUnadjustedAdjusted* Canadian-born (652,005) 19,640 (3.0)1.00 (referent) Industrialized Nations (18,161) 582 (3.2)1.07 (0.98, 1.16)0.93 (0.85, 1.01) Central and East Europe (8,835) 314 (3.6)1.19 (1.06 to 1.33)1.01 (0.90 to 1.13) Hispanic America (7,098) 270 (3.8)1.27 (1.13 to 1.44)1.17 (1.03 to 1.32) Caribbean (15,218) 1,087 (7.1)2.48 (2.33 to 2.64)2.16 (2.02 to 2.30) Sub-Saharan Africa (9,130) 575 (6.3)2.16 (1.99 to 2.36)1.55 (1.42 to 1.70) Middle East and North Africa (8,552) 506 (5.9)2.03 (1.85 to 2.22)1.68 (1.53 to 1.84) East Asia and Pacific (21,581) 1,627 (7.5)2.63 (2.49 to 2.77)1.92 (1.82 to 2.03) South Asia (30,274) 3,159 (10.4)3.75 (3.61 to 3.90)3.42 (3.28 to 3.56) Risk of Gestational Diabetes Among Immigrant Women Ray et al. Epidemiology; Volume 22, Number 6, November 2011

28. Institute for Clinical Evaluative Sciences Presentation Title28 Individual Cardiovascular Events Source: 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

29. Institute for Clinical Evaluative Sciences 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. Institute for Clinical Evaluative Sciences 30 Some ICES projects linking CIC data with ICES data Project TitlePrincipal InvestigatorData sets linked with CIC data A population-based study of HIV-associated maternal and neonatal health using Ontario's administrative databases Rick Glazier CIC, HIV ICES-derived cohort Understanding diagnostic episodes of care in patients with early versus late cancers Patti Groome Ontario Cancer Registry Ontario Breast Screeing Program CIC Diabetic Retinopathy in the Immigrant Population of Ontario Baiju Shah CIC. OHIP, DAD, ICES derived Ontario Diabetes Database Support for Organ and Tissue Donation amonst New Ontarians: a population-based study Amit Garg CIC, OHIP, TrilliumGift of Life Critical Adverse Events following Codeine Prescription Among Various Ethnic Groups David Juurlink CIC Vital Statistics death data, Ontario Drug Benefits Impact of Language on Health Care Utilization, Morbidity and Mortality among Diabetics in Ontario Chaim Bell CIC, ICES derived Ontario Diabetes Data base, Vital Statistics death Enhanced Evaluation and uptake of the fee code for the 18-month enhanced well baby visit Astrid Guttmann CIC, OHIP Mental Health service use patterns for immigrant groups and long term residents in Ontario Rick Glazier CIC, MOHLTC Long term Care data Short-and long-term health effects of temperature change: a population-based study in Ontario, Canada Laura Rosella Canadian Community Health Survey CIC, Vital Statistics Death data Inflammatory Bowel Disease in Immigrants to Canada and their Children: Epidemiology and Access to Specialist Care Eric Benchimol CIC, IBD ICES derived cohort Diabetes in Immigrants from South Asia and their Children: Pilot Data on Incidence and Prevalence Eric Benchimol CIC, ICES derived Ontario Diabetes Data base The Influence of Diabetes on Cancer Screening and Prognosis Lorraine Lipscombe Ontario Cancer Registry Ontario Breast Screening Program Cytobase New Drug Funding Program Cancer Care Ontario Stage Data CIC

31. Institute for Clinical Evaluative Sciences 31 Questions? Comments? Ideas?