What is the Child Health Data Repository?
The Child Health Data Repository is a comprehensive inventory of over 100 Canadian datasets that can be used to search for specific intersections of child/family health and equity variables based on our Conceptual Framework for Child Flourishing in Canada. Through this tool, we strive to promote and facilitate access to existing datasets relevant to child health equity research.
To request a free consultation with our data consultant, Sima Gandhi, please complete the online registration form for our Data Consultation Service. For any other inquiries, or suggestions on how we can improve our Data Repostiry, please send an email to leong.centre@sickkids.ca.
What is Included in the Data Repository?
Description. Provides a summary of the scope of the dataset and what type of information is available.
Flourishing Indicators. Measures of child and family flourishing included in the Leong Centre's adapted Conceptual Framework for Child Flourishing in Canada. These include: Adolescent Suicide, Life Satisfaction, Access to Maternal & Child Mental Health Services, Protection from Violence, Early Child Development & School Readiness, Access to Maternal & Child Health Services, Child Health & Morbidity, Parental Health & Morbidity, Overweight & Obesity, Growth & Nutrition, Educational Achievement, Social Skills, Health Promoting Environment, Reproductive & Sexual Health, Lack of Poverty
Jurisdiction. Refers to the region from which the data is collected, and includes the following categories: Ontario Only, Pan-Canadian, International.
Category. Refers to the type of data categorized as follows:
- Survey Data. Survey data include data collected from a sample of respondents. Data are collected from a targeted audience about a specific topic to conduct research. Survey methods may be cross-sectional or longitudinal, and conducted through include online or paper or questionnaires, telephone surveys, or in-person interviews.
- Routinely Collected Health Data. Routinely collected health data included data collected during health system encounters, including physicians’ offices, diagnostic procedures, hospital admissions, among others. These data are collected to examine health system delivery or performance.
- Routinely Collected Social and Environmental Data. Data sources related to social services provided to families, such as housing, financial assistance, childcare, employment, as well as sources of area and community-level data such as resources, neighbourhood safety, and built environment, among others.
- Clinical Registry. Clinical disease or patient registries including records of individuals with specific conditions, diagnoses, procedures or interventions. Registries provide information on clinical practice, patient outcomes, safety and effectiveness, treatment outcomes and costs.
- Large Prospective Cohorts. Prospective cohorts include observational data on specific disease or clinical populations in real time, extracted from administrative data or electronic health record systems.
Population. The individuals and groups represented in each database, including:
- Perinatal (Maternal & Newborns). Includes data on maternal health (health status, health service use), fertility (treatment, procedures), prenatal (antenatal) care, hospital admissions (pregnancy, labour, birth) post-natal care, early newborn care and screening (age < 30 days), fetal and congenital anomalies, and neonatal outcomes.
- Children & Adolescents. Includes data related to health and social outcomes among children and adolescents aged 30 days to 19 years.
- Families. Data on family and household characteristics and outcomes (e.g. income, educational attainment, employment, family type/composition, social assistance, access to childcare).
Access. How the data can be accessed.
Link. External URL for more information on the dataset, including methodology, data definitions, variables, and related documentation.
How Can Data be Accessed?
This inventory does not provide data access. Information on how to access the specific data associated with the datasets can be found in the details of each, but in general can be accessed through the following:
- ICES data holdings: https://www.ices.on.ca/Data-and-Privacy/ICES-data/Working-with-ICES-Data
- Statistics Canada Microdata Access (information on accessing data using the Public Use Microdata File (PUMF) and Research Data Centres (RDCs): https://www.statcan.gc.ca/en/microdata
List of Datasets (A-Z)
Ontario Association of Residences Treating Youth (OARTY)
Description: The Ontario Association of Residences Treating Youth (OARTY) reports on clinical data from approximately one quarter of children served by member agencies. The OARTY database includes numerous outcome measures for children and youth that are measured at various time points. The reports from this research provide a detailed profile of the children, youth, and young adults placed in the care of OARTY’s agencies.
Access: MCCSS
Ontario Asthma Surveillance Information System (OASIS)
Description: The Ontario Asthma Surveillance Information System (OASIS) was established in 2003 to provide a population-based longitudinal surveillance system for asthma. It continues to provide measures of asthma-related morbidity, mortality, health services use, and provider practice patterns.
Access: ICES, Hospital for Sick Children
Ontario Birth Study
Description: The overall aim of the Ontario Birth Study is to develop a platform for research on pregnancy complications, maternal and infant health, and, ultimately, to assemble a cohort for future studies on the developmental origins of health and disease. To understand how perinatal factors such as parental lifestyle, pregnancy conditions and neonatal medical history may affect children’s growth and neurodevelopment, researchers continue to follow children from the OBS mothers at ages 8 months, 24 months, 36 months and 4.5 years.
Access: Mount Sinai
Ontario Breast Cancer Screening Program
Description: Ontario Breast Screening Program (OBSP) is one of Cancer Care Ontario’s cancer prevention programs. OBSP offers important advantages for women and their physicians, including recruitment, recall and follow-up and ongoing quality assurance. All OBSP sites are accredited with the Canadian Association of Radiologists Mammography Accreditation Program. Some OBSP screening sites are affiliated with breast assessment services, allowing timely, coordinated assessment of women with abnormal mammograms.
Access: ICES, CCO
Ontario Cancer Registry (OCR)
Description: The Ontario Cancer Registry (OCR) is the provincial database which includes information on all Ontario residents diagnosed with or died of cancer. Data sources include hospital admission and discharge records from the Canadian Institute for Health Information; pathology reports from public hospitals and community laboratories; consultation and treatment records of patients who have been referred to any regional cancer centre or their associated hospitals; and death certificates from the Ontario Registrar General.
Access: ICES, CCO
Ontario Child Abuse and Neglect Data System (OCANDS)
Description: OCANDS provides child protection agencies a way to access comprehensive data about investigations conducted in Ontario. It is a provincial level system composed of the various child welfare agencies’ administrative data from across the province that also allows linkages to other systems (e.g. ONLAC, MAP system, Crown Ward system). OCANDS will enable Ontario’s child welfare agencies to generate timely and relevant evidence that can be used to more effectively manage and deliver services for the multiple and complex challenges faced by our most vulnerable children. OCANDS is a child-specific, event-level, longitudinal database that has the capacity to follow children and families from initial report straight through to termination of services for crown wards and those on extended care and maintenance.
Access: OCANDS (University of Toronto)
Ontario Child Health Study (OCHS)
Description: The survey was conducted by Statistics Canada on behalf of Offord Centre for Child Studies at McMaster University in Hamilton, Ontario. The purpose of the Ontario Child Health Study (OCHS) is to collect up-to-date information about children and youth's mental health in Ontario.
Access: Statistics Canada
Ontario Common Assessment of Need (OCAN)
Description: The Ontario Common Assessment of Need (OCAN) is important tool used to identify the needs of clients receiving mental health and addictions services in Ontario. OCAN gives clients and the mental health professionals supporting them, a tool to appropriately track and monitor an individual’s recovery journey. The tool has two components: a consumer-self assessment section and a staff assessment portion. The self-assessment asks clients to identify various needs in areas of their life including accommodation, childcare, transportation, physical health, culture, spirituality, food security, and hopes for the future. The staff-assessment is completed with the client and includes a summary of actions and referrals to address unmet needs that the client chooses to focus on during their recovery planning. Re-assessments are then completed every six months to determine if there has been a change or positive progress in the client’s unmet needs.
Access: ICES, CAMH
Ontario Crohn’s and Colitis Cohort dataset (OCCC)
Description: The Ontario Crohn’s and Colitis Cohort Database (OCCC) includes all Ontario patients who were identified with Inflammatory Bowel Disease (Crohn's disease or Ulcerative Colitis).
Access: ICES
Ontario Dental Indices Survey
Description: The Ontario Dental Indices Survey (DIS) collects data on the dental health of children for use at the public health unit level.