Overview of Mental Health Data in Canada

[Pages:84]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.

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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 Jayne Barker Carla Briante David Casey Debra Chen Jennifer Dotchin Jennifer Dykxhoorn Paula Goering Elliot Goldner

Jean Harvey Wendy Hovdestad Gayatri Jayaraman Rebecca Jesseman Ian Joiner Wayne Jones Brianna Kopp Claudia Lagace Carl Lakaski

Alain Lesage Steve Lurie Nawaf Madi Pat Martens Rhowena Martin Farah Mawani Gail McKean Louise McRae Gillian Mulvale

Tyler Pirie Lisa Petermann Janice Popp Robin Skinner Wendy Thompson Heather Wilcox Matthew Young

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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 ? Definitions for Key Terms...................................................................................................................13 Section Two ? 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 ? 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 ? Mental Health and Mental Illness Information Developments in Other Countries .......................43 Section Five ? 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 ? 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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Glossary of Acronyms

AADAC Alberta Alcohol and Drug Abuse Commission

ACCS Ambulatory Care Classification System

AFM

Addictions Foundation of Manitoba

AFN

Assembly of First Nations

APS

Aboriginal People's Survey

ARMHIS Alberta Regional Mental Health Information System (AB)

BRFSS Behavioral Risk Factor Surveillance System

CADUMS Canadian Alcohol and Drug Use Monitoring Survey

CAMH Centre for Addiction and Mental Health

CAMIMH CanadianAllianceonMentalIllnessandMental Health

CAPE Canadian Academy of Psychiatric Epidemiology

CAR-BC Centre for Addictions Research of BC

CARMHA Centre for Applied Research in Mental Health and Addictions

CAS

Canadian Addiction Survey

CCDSS Canadian Chronic Diseases Surveillance System

CCOH Chiefs Committee on Health

CCRS Continuing Care Reporting System

CCSA Canadian Centre on Substance Abuse

CDC

Centers for Disease Control (US)

CCHS Canadian Community Health Surveys

CCHS-CF Canadian Community Health Surveys ? Canadian Forces

CCHS 1.2 Canadian Community Health Surveys, Cycle 1.2

CCMED Canadian Coroner and Medical Examiner Database

CECA Canadian Executive Council on Addictions

CFMHS CHIRPP

CHMS CIHI CIHR CIS-R CMHA COMHS CPA

CPIM

Canadian Forces Mental Health Survey Canadian Hospital Injury Reporting and Prevention Program Canadian Health Measures Survey The Canadian Institute for Health Information Canadian Institutes of Health Research Revised Clinical Interview Schedule Canadian Mental Health Association Continuity of Mental Health Services of Alberta Canadian Psychological Association/Canadian Psychiatric Association Community-Based Psychiatry Services Database (BC)

Overview of Mental Health Data in Canada

CLSA CMHEI CPCSSN CTADS DAD DIS

Canadian Longitudinal Study on Aging Community Mental Health Evaluation Initiative Canadian Primary Care Sentinel Surveillance Network Canadian Tobacco Alcohol and Drugs Survey Discharge Abstract Database Diagnostic Interview Schedule

DISC

Diagnostic Interview Schedule for Children

DSM

Diagnostic and Statistical Manual

EHR

Electronic Health Record

ER

Emergency Room

FNIGC FNIHRS FRSQ

First Nations Information Governance Committee First Nations and Inuit Regional Health Survey Fonds de la recherche en sant? du Qu?bec

GHQ GPRD HMHDB HONOS HRSDC HSBC ICD ICES

General Health Questionnaire General Practice Research Database (UK) Hospital Mental Health Database Health of the Nations Outcomes Scale Human Resources and Skills Development Canada Health Behaviour in School Children International Classification of Diseases

Institute for Clinical Evaluative Sciences

IMHI IMHIP ISD

ISQ ISM

International Mental Health Indicator Project Improving Mental Health Information Programme

Information Services Division (of National Health Service, Scotland) Institut de la Statistique du Qu?bec Information System Management Database (PEI)

LOS MCHP MCP MHCC MHECCU MHMIS MHOIS

Length of Stay Manitoba Centre for Health Policy Medical Care Plan (NL) Mental Health Commission of Canada Mental Health Evaluation and Community Consultation Unit Mental Health Management Information System Mental Health Outpatient Information System (NS)

MHRA

Medicines and Healthcare Products Regulatory Agency (UK)

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CPHI MSP MSSS NACRS NHANES NHAHRC

NHS

Canadian Population Health Initiative Medical Services Plan (BC) Minist?re de la Sant? et des Services sociaux National Ambulatory Care Reporting System National Health and Nutrition Examination Survey National Health and Hospitals Reform Commission (Australia) National Health Service (UK)

NLSCY NPDUIS

NPHS OCAN

National Longitudinal Survey of Children and Youth National Prescription Drug Utilization Information System National Population Health Survey Ontario Common Assessment of Need

OCHS ODBD

Ontario Child Health Survey Ontario Drug Benefit Database

OECD OHIP

Organization for Economic Co-operation Ontario Health Insurance Plan

MIS OMHRS PALS PHRN PHAC PHRU

Management Information System (ON, MB) Ontario Mental Health Reporting System Participation and Activity Limitation Survey Population Health Research Network Public Health Agency of Canada Population Health Research Unit (BC)

PTSD

Post-traumatic stress disorder

RAI-MH RAMQ

Resident Assessment Instrument ? Mental Health R?gie de l'assurance maladie du Qu?bec

RHS

First Nations Regional Longitudinal Health Survey

SIID

Strategic Initiatives and Innovations Directorate

SLCDC UM-CIDI

WHO WHODASII

Survey on Living with Chronic Disease in Canada

University of Michigan Composite International Diagnostic Interview World Health Organization

World Health Organization Disability Assessment Schedule II

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Executive Summary

Background The federal government has given the Mental Health Commission of Canada (MHCC) a mandate to spark transformative change in the country's mental health system. *The abilityof the MHCC and its stakeholders to create, share, and access data around mental health and mental illnesses is an important requirement to help achieve this goal. Such data is critical to informing service providers, decision makers, health organizations, and many other groups about the mental health needs of Canadians, and the approaches needed to meet those needs. In its landmark blueprint for system change, Changing Directions, Changing Lives: The Mental Health Strategy for Canada, the MHCC identified the improvement of mental health data collection, research, and knowledge exchange across Canada as a key priority. As part of its own work on this priority even before the release of the Strategy, the MHCC collaborated with its partners to undertake two reports on the mental health data landscape in Canada. This overview synthesizes and updates the findings of those previous publications, identifying where such data on mental health and mental illnesses exists and in what form, while also examining where and how information remains lacking.

National and provincial mental health data initiatives A handful of key national organizations have mental health information-related initiatives within their broader health mandates. These include the Public Health Agency of Canada, which has developed some capacity for the surveillance of mental illnesses within a broader data system and is developing a framework for the surveillance of positive mental health; Statistics Canada, which has made mental illness a special topic of interest in some surveys; and, the Canadian Institute for Health Information, which made mental health and resilience a key area of focus for a three-year period of its Canadian Population Health Initiative. While these organizations continue to make valuable contributions, there is no clear vision for mental health information as a whole. There is also no single organization at the national level dedicated to gathering and reporting on data about mental health, mental health services and policies. At the provincial level, some broader health data analysis/reporting organizations have done mental health-related analyses in recent years. However, no organization or division is dedicated solely to the collection, analysis, and dissemination of mental health information at the provincial and territorial level.

Administrative data Data from administrative sources is one of the types of mental health and mental illness information currently available in Canada. These data are collected at a high level, most often by provinces, for the purpose of managing health care, and include four major types: hospital admissions and discharges, physician billing, ambulatory care, and drug databases. The Canadian Institute for Health Information compiles some of these data at the national level.

* Throughout this document the term `mental health system' is defined from a population health perspective and includes determinants as well as a full continuum of interventions from promotion and prevention through to specialized care. In addition, mental health is conceptualized according to the dual continuum model.

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