Health Care Access Research and Developmental Disabilities (HCARDD) is investigating how adults with developmental disabilities in Ontario use primary healthcare services and whether guideline-recommended care is being provided. This study is being conducted because people with developmental disabilities are known to:

• Be at risk of poor health compared to the general population
• Have difficulty accessing health care services that meet their unique needs

HCARDD focusses on the evaluation of primary care as a means of improving the health of adults with developmental disabilities. This has benefits for people with developmental disabilities and their families. There are also potential benefits for the health system through reducing the resources needed to care for preventable conditions in this population.

This study is the first involving the linkage of data sets originating from two ministries to study the healthcare of people with developmental disabilities in Ontario. The data sources are the Institute for Clinical Evaluative Sciences (ICES) which houses administrative health data, and the Ministry of Community and Social Services (MCSS) which houses data on income supports. This cross-ministry data linkage is needed because developmental disabilities are not consistently noted in health data. Linking data from two sources will provide a more representative sample to study health and healthcare of this vulnerable population.

One of the first steps in the research was to count individuals with developmental disabilities in the data sets held by ICES and MCSS. To do this the researchers searched the data for twelve diagnostic categories  associated with developmental disabilities (e.g., Down syndrome, Fragile X, autism, and Fetal Alcohol Syndrome).

Using health administrative data from ICES alone, the researchers counted approximately 40,000 adult Ontarians with a developmental disability. After linking records from the ICES data with the data from MCSS we counted an additional 20,000 individuals with developmental disabilities. The combined total of roughly 60,000 adults is currently one of the largest samples of persons with developmental disabilities available internationally. It will allow HCARDD to provide a more complete picture of the number of individuals with developmental disabilities and their health care use. It is important to note that neither the health data nor the income support data alone would have been able to identify the full group of individuals with developmental disabilities.

People from ICES and MCSS worked very hard to create a data sharing agreement and to develop the methods for data linkage and data analyses across the two bodies. This was an exceptionally complex task breaking much new ground as it is the first time in Ontario that data linkage has been undertaken and accomplished between ICES and MCSS. 

HCARDD at ICES
Jennifer Bennie (MEd) is the Research Coordination Lead for the Primary Care and Population Health Program and the Mental Health and Addictions Research Initiative. Jennifer coordinated the collection and synthesis of relevant information (e.g., ministry legislation, policies and practices) for the data sharing agreement between ICES and MCSS.

Drew Wilton (MSc) is an Analyst II in Programming and Biostatistics. He has experience in the creation, maintenance, and analysis of large-scale databases from administrative data. His research focus is in mental health and cancer-related issues.

Karey Iron (MHSc) is the Director of Data Partnerships and Development. Karey worked with the ICES and MCSS teams to facilitate the privacy impact assessment and the subsequent data sharing agreement that has allowed the sharing of MCSS information for HCARDD.

Nelson Chong (BSc) is a Health Data Specialist. He was involved in the linkage of data from the Ontario Disability Support Program to the Ontario Registered Persons Database, a repository of all Ontarians ever issued an Ontario Health Insurance Plan health card number. This linkage allows further linkage to other ICES administrative datasets for analysis.

The Statistics and Analysis Unit (SAU) at MCSS conducts in-depth analytic research into selected social assistance issues and collaborates with all levels of the government, academics and community researchers in data sharing agreements and research projects. In 2009 SAU entered into a research partnership with the Centre for Addiction and Mental Health (CAMH) and the Institute for Clinical Evaluative Sciences (ICES) to support the HCARDD project.

From left to right in the picture: Aklilu Tefera is the Manager of the Statistics and Analysis Unit within the Policy Research and Analysis branch of MCSS. Daniel Lawlor is an Information Systems Team Lead at the Statistics and Analysis Unit and Sylvie Guerreiro is SAU's Information Analysis and Special Projects Coordinator. Charlene Bertrand-Roye (not in the picture) is currently a Senior Policy Advisor in the Ontario Disability Support Program Branch. She has coordinated with various members of the HCARDD working group to lead the development of the Data Sharing Agreement between ICES and MCSS.

This summer HCARDD researchers will present at:

The 136th Annual meeting of the American Association of Intellectual and Developmental Disabilities, Charlotte, North Carolina, June 18-21 http://www.aaidd.org/

The World Congress of the International Association for the Scientific Study of Intellectual Disabilities, Halifax, Canada, July 9-14 https://www.iassid.org/