While Canada collects data on infant and early years mental health and development (IEYMHD), the breadth of data is inconsistent across and within provinces. Further, IEYMHD data stored in electronic health records may be inaccessible to decision-makers when data is not properly analyzed and reported (The College of Family Physicians of Canada, 2017). Thus, to understand IEYMHD, it is critical to identify the data that is available, gaps in data collection, and foster intersectoral collaboration to leverage existing efforts.
To address these goals within the context of Ontario, Canada, two meetings with researchers, clinicians, and decision-makers from local, provincial, and federal organizations were held in November 2024 and May 2025 (Infant and Early Mental Health Promotion et al., 2026). During the meetings, persistent challenges regarding IEYMHD data collection and the ability to use such data for service- and system-planning were identified, as were recommendations to address these challenges.
Conduct an Environmental Scan and Create a Data Inventory
During these meetings, it was determined that researchers, clinicians, and policymakers have limited knowledge of current IEYMHD data collection in other sectors and how to access this data, which may lead to duplicated efforts and limited expansion of existing work. Additionally, the usefulness of existing data is reduced when it cannot be used to directly inform clients’ mental health and developmental needs and service delivery. To address this gap, we recommend conducting an environmental scan to identify ongoing data collection efforts and report how data is used. In addition, the creation of a data inventory may be considered to promote data accessibility and linkage. Both an environmental scan and data inventory would help inform service- and system-planning.
Improve Data Linkages
When data is siloed, its use and meaningfulness is limited. There is a specific lack of data that links individuals’ information between sectors and over time. For example, the Ontario Ministry of Health (MOH) does not link data from community mental health agencies with other healthcare services (Office of the Auditor General of Ontario (OAGO), 2025), and within community settings, clinicians report that clients’ initial mental health needs are often not linked with outcomes following treatment. Data linkage should be improved using unique identifiers, such as health-card numbers, that connect individuals’ information throughout their care journey and across data sources and sectors. MOH has agreed to consider similar recommendations provided by an independent auditor (OAGO, 2025). It may be beneficial to expand existing initiatives, such as the Institute for Clinical Evaluative Sciences and the Child and Youth Mental Health Business Intelligence Solution, which collect health- and community-related data that is reported by clinicians and service providers and assessed by researchers and decision-makers.
Promote Intersectoral Collaboration
A likely contributor to the limited knowledge regarding existing data collection efforts, as well as limited data linkage, is the lack of intersectoral collaboration between government departments, researchers, and clinicians. The OAGO (2025) reported that MOH does not have accurate data to identify how many children have complex mental health needs and require services from other sectors. We recommend increased efforts to promote collaboration between governmental and community partners from the various sectors impacting IEYMHD data collection and service-delivery.
Standardize Data Collection
There is a need to standardize indicators and definitions, assessments, data collection methods, reporting, and training. A lack of standardization may contribute to varied data quality and limit comparisons between data sources. For example, definitions of wait times in Ontario differ across community-based mental health agencies, as well as between MOH and the Canadian Institute for Health Information, thus impacting the ability to monitor and improve service wait times (OAGO, 2025). There is also a call to use consistent, reliable, and validated tools to assess IEYMHD needs. While there is an expectation for community agencies to use evidence-based measures, MOH does not mandate a suite of acceptable tools; however, MOH intends to work with partners to improve assessment and data collection (OAGO, 2025). Clinicians have warned against the universal use of a single assessment tool, highlighting the need to consider cultural relevancy and individual needs when deciding which tool to use. Finally, there is a need to standardize the collection of sociodemographic and equity data to better capture diverse backgrounds and identities and inform which communities access services. Crucially, this work should be conducted in collaboration with diverse communities to ensure that culturally meaningful indicators are developed and appropriate terminology is used. Currently, MOH collects limited sociodemographic data on clients accessing community mental health services (OAGO, 2025), and data collection differs between agencies, researchers, and government agencies. For example, Statistics Canada and Business Intelligence Solution, a reporting system used by MOH, use different categories when collecting race data, thus limiting the ability to compare this indicator between data sources (OAGO, 2025). However, it is also important to ensure that data does not become so over-standardized that details about diverse cultural backgrounds, lived expertise, or evolving identities are lost. We recommend that researchers, clinicians, and government agencies collaborate with each other, as well as with families and communities, to develop evidence-based practices for assessment, data collection, and reporting.
Prioritize Family and Community Collaboration
There is limited collaboration with families and communities, particularly those facing systemic inequities. Community mental health agencies have limited guidance from MOH on best practices for providing services to communities facing inequities (OAGO, 2025), and there is a need to work with diverse communities and families to develop guidance. Ultimately, researchers, clinicians, families, and communities should collectively determine which research questions are important to consider, as well as how findings will be used and shared to the larger community. We recommend increasing collaboration by creating family advisory committees, co-designing data collection and knowledge sharing initiatives, embedding research activities within communities, and promoting trust-building and self-determination.
Increase Guidance
There is still uncertainty on best practices for collecting IEYMHD data, leading researchers and clinicians to call for increased guidance from government agencies, including guidelines related to developmental surveillance, care pathways, evidence-based tool implementation, data linkage, and data sharing. Many of the gaps previously discussed could be addressed through such guidance.
Actioning the Recommendations
Although our recommendations aim to address gaps within Ontario, they can be adapted to other regions facing similar challenges. The recommendations aim to promote standardized, collaborative IEYMHD data collection that informs service- and system-delivery across healthcare and education sectors. Specifically, standardized and integrated data help inform legislation and resource allocation, improve service access, and may reduce early education and health disparities, thus promoting IEYMHD and setting children up for healthy development across their lifespan. Clinicians and researchers should advocate for their local government to implement these recommendations.
References
Infant and Early Mental Health Promotion, Knowledge Institute on Child and Youth Mental Health and Addictions, & Public Health Ontario. (2026). The state of early mental health & developmental data in Ontario: Opportunities for research and collaboration. https://www.cymha.ca/Modules/ResourceHub/
Office of the Auditor General of Ontario (2025). Performance audit: Community-based child and youth mental health program. https://www.auditor.on.ca/en/content/specialreports/specialaudits/en2025/AR-PA_CYMH_en25.html
The College of Family Physicians of Canada (2017). Position statement: supporting access to data in electronic medical records for quality improvement. The College of Family Physicians of Canada. https://www.cfpc.ca/en/resources/communications/position-statement-supporting-access-to-data-in-el
Authors
Kulkarni, Chaya,
Infant and Early Mental Health Promotion, The Hospital for Sick Children,
Canada
Cappelli, Mario,
Knowledge Institute on Child and Youth Mental Health and Addictions; Children’s Hospital of Eastern Ontario Research Institute,
Canada
Carsley, Sarah,
Public Health Ontario,
Canada
Beaudin, Kayla,
Children’s Hospital of Eastern Ontario Research Institute,
Canada
