Overview on Mental Health Data in Canada

[Pages:92]Overview on Mental Health Data in Canada

Background, Needs, and Gaps

June 2014

mentalhealthcommission.ca

Correspondence regarding this document can be addressed to: Knowledge Exchange Centre The Mental Health Commission of Canada 110 Quarry Park Blvd SE, Suite 320 Calgary, Alberta, Canada, T2C 3G3 Telephone: 403-255-5808 Fax: 403-385-4044 Email: info@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.

ACKNOWLEDGEMENTS

This document is a combination of the following two separate papers, which were completed and merge in 2011, and updated in 2014:

A Framework for a Mental Health Strategy for Canada

Information for Mental Health System Transformation: Background

Research Team:

Carol E. Adair, Elizabeth Lin, & Steve Kisely

Project Team Committee:

Rebecca Jesseman Rhowena Martin Jean Harvey Ian Joiner Nawaf Madi Louise McRae Terri-Lyn Bennett

Jayne Barker Farah Mawani Gillian Mulvale Janice Popp Science Advisory Committee Debra Chen Brianna Kopp

Carla Briante Wendy Hovdestad Claudia Lagace Carl Lakaski Karen Roberts Robin Skinner Steve Lurie

Jennifer Dotchin Heather Wilcox Matthew Young Pat Martens Elliot Goldner

Jennifer Dykxhoorn Paula Goering Alain Lesage Gail McKean Wayne Jones

Gaya Jayaraman Carla Briante David Casey Lisa Petermann

TABLE OF CONTENTS

ACKNOWLEDGEMENTS .......................................................................................................................................... 2 TABLE OF CONTENTS.............................................................................................................................................. 3 GLOSSARY OF INITIALISMS AND ACRONYMS ......................................................................................................... 1

. .................................................................................................................................................................................6 FILLING THE GAPS...........................................................................................................................................................6 INFORMATION FOR MENTAL HEALTH SYSTEM TRANSFORMATION ....................................................................... 8 OVERVIEW.................................................................................................................................................................... 8 A BRIEF HISTORY OF THE MENTAL HEALTH INFORMATION ISSUE IN CANADA .............................................................................8 TOWARD BETTER MENTAL HEALTH INFORMATION IN CANADA ? FOUNDATIONS FOR DIALOGUE ...................................................9 SECTION ONE ? DEFINITIONS FOR KEY TERMS ..................................................................................................... 11 SECTION TWO ? THE CURRENT MENTAL HEALTH INFORMATION LANDSCAPE IN CANADA .................................. 13 KEY NATIONAL AND PROVINCIAL ORGANIZATIONS..............................................................................................................13 THE PUBLIC HEALTH AGENCY OF CANADA ........................................................................................................................13 STATISTICS CANADA .....................................................................................................................................................15 CANADIAN INSTITUTE FOR HEALTH INFORMATION..............................................................................................................16 CANADIAN CENTRE ON SUBSTANCE ABUSE .......................................................................................................................17 EXAMPLES OF PROVINCIAL INITIATIVES .............................................................................................................................18 OTHER EXAMPLES OF DATA COLLECTION INITIATIVES ..........................................................................................................19 SUMMARY .................................................................................................................................................................. 19 TYPES OF MENTAL HEALTH INFORMATION CURRENTLY AVAILABLE IN CANADA ........................................................................20 TABLE 1: PRIMARY CIHI DATASETS RELEVANT TO MENTAL HEALTH ......................................................................................22 TABLE 2: ADMINISTRATIVE DATA SOURCES BY PROVINCE ....................................................................................................24 TABLE 3: CROSS-SECTIONAL SURVEYS CONDUCTED IN PROVINCES .........................................................................................32 OTHER TYPES OF INFORMATION: SENTINEL SYSTEMS; CASE REGISTRIES; ELECTRONIC HEALTH RECORDS; AND PERFORMANCE MEASUREMENT SYSTEMS ..............................................................................................................................................40 PRIVACY AND MENTAL HEALTH INFORMATION IN CANADA ..................................................................................................44 SECTION THREE ? MENTAL HEALTH INFORMATION DEVELOPMENTS IN OTHER COUNTRIES ............................... 45 SECTION FOUR ? NEEDS IDENTIFICATION AND GAP ANALYSIS............................................................................. 48 GOALS/PURPOSES FOR INFORMATION: ............................................................................................................................48 FEATURES/FUNCTIONS OF A MENTAL HEALTH INFORMATION/SURVEILLANCE SYSTEM(S): .........................................................49 TYPES OF INFORMATION NEEDED:...................................................................................................................................49 PARTICULAR GROUPS OR POPULATIONS FOR WHOM INFORMATION IS FELT TO BE INADEQUATE..................................................50 NEW DATA NEEDED TO MEASURE PROGRESS TOWARD ACHIEVING THE SEVEN FRAMEWORK GOALS:..............................................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? ...........................................................................................................52 WHAT ARE THE IMMEDIATE NEXT STEPS NEEDED FOR THIS TRANSFORMATION? ........................................................................52 SECTION FIVE ? SUMMARY AND WAYS FORWARD .............................................................................................. 53 REFERENCES......................................................................................................................................................... 55 APPENDIX A ......................................................................................................................................................... 70 SUMMARY OF THE FINDINGS FROM THE SYSTEMATIC GAP ANALYSIS ......................................................................................70 APPENDIX B ......................................................................................................................................................... 88 QUESTIONS ASKED DURING CONSULTATION WITH RESEARCHERS, SUBJECT EXPERTS, & DATA EXPERTS........................................88

GLOSSARY OF INITIALISMS AND ACRONYMS

AADAC ACCS AFM AFN APS

ARMHIS BRFSS

CADUMS CAMH

CAMIMH CAPE

CAR-BC CARMHA

CAS CCDSS CCOH

CCRS CCSA CDC CCHS CCHS-CF CCHS 1.2 CCMED CECA CHIRPP CHMS CIHI CIHR CIS-R CMHA COMHS CPA CPIM CPHI CLSA CMHEI CPCSSN DAD

DIS DISC DSM EHR

Alberta Alcohol and Drug Abuse Commission Ambulatory Care Classification System Addictions Foundation of Manitoba Assembly of First Nations Aboriginal People's Survey Alberta Regional Mental Health Information System (AB) Behavioral Risk Factor Surveillance System Canadian Alcohol and Drug Use Monitoring Survey Centre for Addiction and Mental Health Canadian Alliance on Mental Illness and Mental Health Canadian Academy of Psychiatric Epidemiology Centre for Addictions Research of BC Centre for Applied Research in Mental Health and Addictions Canadian Addiction Survey Canadian Chronic Diseases Surveillance System Chiefs Committee on Health Continuing Care Reporting System Canadian Centre on Substance Abuse Centers for Disease Control (US) Canadian Community Health Surveys Canadian Community Health Surveys ? Canadian Forces Canadian Community Health Surveys, Cycle 1.2 Canadian Coroner and Medical Examiner Database Canadian Executive Council on Addictions 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) Canadian Population Health Initiative Canadian Longitudinal Study on Aging Community Mental Health Evaluation Initiative Canadian Primary Care Sentinel Surveillance Network Discharge Abstract Database Diagnostic Interview Schedule Diagnostic Interview Schedule for Children Diagnostic and Statistical Manual electronic health record

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ER FNIGC FNIHRS FRSQ

GHQ GPRD HMHDB HONOS HRSDC HSBC

ICD ICES IMHI IMHIP ISD ISQ ISM LOS MCHP MCP MHCC MHECCU MHMIS MHOIS MHRA MIS MSI MSP MSSS NACRS NHANES NHAHRC NHS NLSCY NPDUIS NPHS OCAN OCHS ODBD OECD OHIP OHS OMHRS PALS

emergency room First Nations Information Governance Committee First Nations and Inuit Regional Health Survey Fonds de la recherche en sant? du Qu?bec 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 Behavior in School Children International Classification of Diseases Institute for Clinical Evaluative Sciences 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) 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) Medicines and Healthcare Products Regulatory Agency (UK) Management Information System (ON, MB) Medical Services Insurance (NS) 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) National Longitudinal Survey of Children and Youth National Prescription Drug Utilization Information System National Population Health Survey Ontario Common Assessment of Need Ontario Child Health Survey Ontario Drug Benefit Database Organization for Economic Co-operation Ontario Health Insurance Plan Ontario Health Survey Ontario Mental Health Reporting System Participation and Activity Limitation Survey

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PHRN PHAC PHRU PTSD RAI-MH RAMQ

RHS SIID SLCDC UM-CIDI WHO WHODASII

Population Health Research Network Public Health Agency of Canada Population Health Research Unit (BC) Post-traumatic stress disorder Resident Assessment Instrument ? Mental Health R?gie de l'assurance maladie du Qu?bec First Nations Regional Longitudinal Health Survey Strategic Initiatives and Innovations Directorate 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 ability of 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 availability of mental health data 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 a fairly strong system for the surveillance of mental illnesses; Statistics Canada, which has made mental health a special topic of interest in some surveys; and the Canadian Institute for Health Research, which made mental health and resilience a key area of focus for a three-year period of its Canadian Population Health Initiative.

While the above mentioned 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 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.

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