Institute for Clinical Evaluative Sciences Linking Citizenship and Immigration Canada (CIC) data...

Institute for Clinical Evaluative SciencesInstitute 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 IronMarch 15, 2014

Statistics Canada 2014 1

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

Institute for Clinical Evaluative SciencesInstitute 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 sitesacross Ontario

Ontario population= 13.5 M

ICESCentral - TorontoICESQueens – KingstonICES Ottawa – OttawaICES@UofT– Toronto downtownICES Western – London

Under development:McMaster - Hamilton

In negotiation:Lakehead – Thunder Bay

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


People &

Geography (IKN)

Population Estimates

Canada Census Profiles

Postal CodeConversion/

Geographical

ICES Data Repository: Individual records, De-identified and Linkable

People in Ontario since

1985

Unique individual

anonymous #IKN

Death register

Unique ICES Key Numberencrypted HCN


People &

Geography (IKN)Health

Services (IKN)

Physician claims

In-pt hospital discharge abstracts

Emergency and

ambulatory care abstractsPrescription drug claims

(65 and over)

Home care claims

Rehab claims

Long-term care visits

In-patient mental health

data

Provider/Facilities

PhysiciansHospitals

Complex careLong-term care

homesHome care

Real-time (IKN)

*HOBIC *Peritoneal

Dialysis




Geographical

ICES Data Repository: Individual level, De-identified and Linkable


1985

Unique individual

anonymous #IKN

Death register

IKN=unique algorithm based on Ontario health card number

Institute for Clinical Evaluative Sciences Presentation Title 7

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


Emergency and

ambulatory care abstractsPrescription drug claims

(65 and over)

Home care claims

Rehab claims



data

Provider/Facilities

PhysiciansHospitals


homesHome care

Real-time (IKN)

*HOBIC *Peritoneal

Dialysis



Primary Collected Data

& Other!!!

(IKN)


Geographical

ICES Data Repository: De-identified and Linkable


1985

Unique individual

anonymous #IKN

*HIV

Developmental

Disabilities

Death register



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


Emergency and ambulatory care abstracts

Prescription drug claims

(65 and over)

Home care claims

Rehab claims



data

Provider/Facilities

PhysiciansHospitals


homesHome care

Real-time (IKN)

*HOBIC *Peritoneal

Dialysis



Primary Collected Data

& Other!!!

(IKN)


Geographical

ICES Data Repository: De-identified and Linkable


1985

Unique individual

anonymous #IKN

*HIV

Developmental

Disabilities

Death register


LinkedData set


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)


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?


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


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


Data Partners > 200 Data Sharing Agreements last year

Health sector:Ministry of Health and Long Term Care – most admin dataCancer Care Ontario; Cardiac Care NetworkPOGO; BORN CIHIOntario Association of CCACs*Ontario Coroner’s OfficeHospitals, physicians, researchersPublic Health OntarioChildren’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


Data Integration, Matching and De-identification

Partner’s Data

Health card #First nameLast name

Date of birthSex

Postal code Raw data a

b

ICES Registered

Persons Database

+ IKN

ICES Data

Disaster recovery vault

f

Virtual datashredder

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 IKN

Project proposal for linked data

set

Privacy Impact

Assessment

Research Ethics

Approval

g

h

i

j

e

ICESICES Key Number (IKN) assigned to matched records

De-identificationd

c


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


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


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)


0

20000

40000

60000

80000

100000

120000

140000

160000

Linked + Unlinked Records by Calendar Year in Immigration Data (cic2010)

Valid IKN by deterministic linkage Valid IKN by probablistic linkage IKN not found

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


Unlinked Records by Country of Birth

4%3%3%3%3%

3%2%

2%2%

1%1%

1%1%

1%1%1%1%1%1%1%1%1%1%1%1%1%

Other Countries20%

4%

Hong Kong10%

India12%

China, People's Republic of15%

China, People's Republic ofIndiaHong KongUnited States of AmericaPhil ippinesVietnam, Socialist Republic ofPakistanSri LankaUnited Kingdom and ColoniesIranTaiwanKorea, Republic ofPolandGuyanaLebanonEgyptPortugalJamaicaRussiaBangladeshRomaniaTrinidad & Tobago, Republic ofIraqGermany, Federal Republic ofYugoslaviaMalaysiaUkraineUnited Arab EmiratesEl SalvadorMoroccoOther Countries


Slide: Mahmoud Azimaee – ICES Health Data Lead



Slide: Mahmoud Azimaee – ICES Health Data Lead


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


Welcome, background and agenda Doug ManuelKarey Iron

Martha Justus

Overview of workshop deliverables

Overview of CIC data at ICES – past and present Marisa CreatoreWhy CIC data is important to the health of Moms and babies Joel RayIncidence of cardiovascular events in immigrants to Ontario Jack 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 Ontario Mike Campitelli

General Discussion All

Data integration and quality assessment Mahmoud Azimaee

Data discussion AllBrainstorming for next year ideas All

Next steps and close Doug Manuel

First Annual CIC ICES Workshop - Faculty Club, University of TorontoMay 9 2013


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, MarisaCreatore


Risk of cerebral palsy by world region of origin to non-immigrants

0

0.2

0.4

0.6

0.8

1

1.2

0.0 0.5 1.0 1.5 2.0 2.5 3.0 3.5 4.0

Years of follow-up starting 28 days after birth

Ad

just

ed in

cid

ence

rat

e p

er 1

000

per

son

-yea

rs

Non-immigrants

Middle East and North Africa

Sub-Saharan Africa

Hispanic America

Western Nations and Europe

East Asia and Pacific

Caribbean

South Asia

Source: Joel G Ray, Donald A Redelmeier, Marcelo L. Urquia, Astrid Guttmann, Sarah D McDonald, Marian J Vermeulen; Work in Progress 2014


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.


74.4 76.080.7 78.5 77.3

76.9 76.1 74.4 73.1 67.5

0

10

20

30

40

50

60

70

80

90

100

The percent of people aged 40+ with no previous diagnosis of diabetes, who were screened for diabetes beween 2004-2007.

Source:

Creatore et al., CMAJ, 2010.


Risk of gestational diabetes mellitus

Odds ratio (95% confidence interval)

World region of birth (no. deliveries) No. (%) events Unadjusted Adjusted*

Canadian-born (652,005) 19,640 (3.0) 1.00 (referent) 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 WomenRay et al. Epidemiology; Volume 22, Number 6, November 2011


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


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


Some ICES projects linking CIC data with ICES data Project Title Principal Investigator Data 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


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