Overview of Mental Health Data in Canada

Overview of Mental Health

Data in Canada

Background, Needs, and Gaps

September 2014

mentalhealthcommission.ca

Overview of Mental Health Data in Canada

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mentalhealthcommission.ca

CORRESPONDENCE REGARDING THIS DOCUMENT CAN BE ADDRESSED TO:

Knowledge Exchange Centre

The Mental Health Commission of Canada

350 Albert Street, Suite 1210, Ottawa

Ontario, Canada, K1R 1A4 Telephone: 613683-3755

Fax: 613-798-2989

Email:

mhccinfo@mentalhealthcommission.ca

SUGGESTED CITATION:

Mental Health Commission of Canada. (2014). Overview of Mental Health Data in Canada: Background, Needs, and Gaps,

Calgary, AB. Copies of this report are available online at: mentalhealthcommission.ca

Production of this document is made possible through a financial contribution from Health Canada. The views represented

herein solely represent the views of the Mental Health Commission of Canada.

Overview of Mental Health Data in Canada

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Acknowledgements

This document is a combination of the following two separate papers, which were completed and merged in 2011, and

updated in 2014:

?

A Framework for a Mental Health Strategy for Canada

?

Information for Mental Health System Transformation: Background

The Mental Health Commission considers this document to be one that can be updated. Please submit any changes to

info@mentalhealthcommission.ca

RESEARCH TEAM:

Carol E. Adair, MSc. PhD Depts. of Community Health Sciences and Psychiatry, University of Calgary

Elizabeth Lin, MSc. PhD Centre for Addiction and Mental Health and University of Toronto

Steve Kisely, MD, PhD Dept. of Psychiatry, University of Queensland

REVIEWERS AND PROJECT TEAM MEMBERS:

Jennifer Ali

Jean Harvey

Alain Lesage

Tyler Pirie

Jayne Barker

Wendy Hovdestad

Steve Lurie

Lisa Petermann

Carla Briante

Gayatri Jayaraman

Nawaf Madi

Janice Popp

David Casey

Rebecca Jesseman

Pat Martens

Robin Skinner

Debra Chen

Ian Joiner

Rhowena Martin

Wendy Thompson

Jennifer Dotchin

Wayne Jones

Farah Mawani

Heather Wilcox

Jennifer Dykxhoorn

Brianna Kopp

Gail McKean

Matthew Young

Paula Goering

Elliot Goldner

Claudia Lagace

Carl Lakaski

Louise McRae

Gillian Mulvale

Overview of Mental Health Data in Canada

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Overview of Mental Health Data in

Canada

Glossary of Acronyms ................................................................................................................................................... 6

Executive Summary ...................................................................................................................................................... 8

Background ........................................................................................................................................................ 8

National and provincial mental health data initiatives ............................................................................................ 8

Administrative data............................................................................................................................................. 8

Surveys .............................................................................................................................................................. 9

Longitudinal/cohort studies ................................................................................................................................. 9

Other sources................................................................................................................................................... 10

Filling the gaps ................................................................................................................................................. 10

Information for Mental Health System Transformation? ......................................................................................... 11

Overview ......................................................................................................................................................... 11

A Brief History of the Mental Health and Mental Illness Information Issue in Canada .............................................. 11

Toward Better Mental Health and Mental Illness Information in Canada - Foundations for Dialogue ........................ 12

Section One ¨C Definitions for Key Terms ................................................................................................................... 13

Section Two ¨C The Current Mental Health Information Landscape in Canada ....................................................... 14

Key National and Provincial Organizations ........................................................................................................... 14

The Public Health Agency of Canada ................................................................................................................... 14

Statistics Canada .............................................................................................................................................. 16

Canadian Institute for Health Information ........................................................................................................... 16

Canadian Population Health Initiative ................................................................................................................. 17

Canadian Centre on Substance Abuse ................................................................................................................. 18

Examples of Provincial Initiatives ........................................................................................................................ 18

Other Examples of Data Initiatives ...................................................................................................................... 20

Summary ......................................................................................................................................................... 20

Section Three ¨C Data Collection in Canada ............................................................................................................... 21

Types of Mental Health and Mental Illness Information Currently Available in Canada ............................................ 21

Table 1: Primary CIHI Datasets Relevant to Mental Health .................................................................................... 23

Table 2: Administrative Data Sources by Province ................................................................................................ 24

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Validity of Information....................................................................................................................................... 27

Data linkage ..................................................................................................................................................... 28

Access ............................................................................................................................................................. 28

Surveys ............................................................................................................................................................ 28

Provincial Population-based Cross-sectional Surveys ............................................................................................ 32

Table 3: Cross-sectional Surveys Conducted in Provinces ...................................................................................... 32

Strengths and Limitations of Population-based Cross-sectional Surveys ................................................................. 34

National Longitudinal Cohort Studies .................................................................................................................. 35

Strengths and Limitations of Longitudinal Studies ................................................................................................ 38

Other Types of Information: Sentinel Systems; Case Registries; Electronic Health Records; and Performance

Measurement Systems ...................................................................................................................................... 39

Section Four ¨C Mental Health and Mental Illness Information Developments in Other Countries ....................... 43

Section Five ¨C Needs Identification and Gap Analysis .............................................................................................. 46

Goals & Purposes for Information in Canada: ...................................................................................................... 46

Features/Functions of a Mental Health Information/Surveillance System(s): .......................................................... 47

Types of Information Needed: ........................................................................................................................... 47

Particular Groups or Populations for Whom Information is Felt to be Inadequate ................................................... 50

New data needed to measure progress toward achieving the seven goals outlined in Toward Recovery and Wellbeing:

....................................................................................................................................................................... 50

What is needed to support the transformation of the mental health system? ........................................................ 51

What consultation strategy would you recommend to advance the agenda toward a more comprehensive and

effective mental health information system? ...................................................................................................... 51

Section Six ¨C Summary and Ways Forward ............................................................................................................... 52

References .................................................................................................................................................................. 53

Appendix A .................................................................................................................................................................. 65

Summary of the Findings from the Systemic Gap Analysis ..................................................................................... 65

Appendix B .................................................................................................................................................................. 85

Questions Asked During Consultation with Researchers, Subject Experts, and Data Experts ..................................... 85

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