Strengths and Limitations of Health and Disability Support Administrative Databases for Population‐Based Health Research in Intellectual and Developmental Disabilities

Abstract

Individuals with intellectual and developmental disabilities (IDD) experience high rates of social and health disadvantage. Planning effective services that meet the needs of this vulnerable population requires good population-based data that are collected on a routine, ongoing basis. However, in most jurisdictions, none of the commonly available data (e.g., health or disability benefits administrative data) completely captures the IDD population. To more accurately identify persons with IDD in a population, one solution is to link data across multiple sources. To do this, the authors report on an effort to create a linked database to identify a cohort of adults, aged 18-64, with IDD in Ontario and use these data to examine how the linkage can help study health and healthcare access. The linked dataset was created using four health and one disability income support databases. Standardized differences were used to compare sociodemographic and clinical characteristics of the IDD cohorts identified through the health, disability income support, and linked datasets. Indirect estimation was used to evaluate which IDD subgroups might be over-or underestimated if only a single source of data was available. The linked database identified a cohort of 66,484 adults with IDD (0.78% prevalence). The health and disability income support data each uniquely identified approximately a third of the cohort. Health data were more likely to identify younger adults (18-24 years), those with psychiatric illnesses, and hospitalized individuals. The disability income support data were more likely to identify adults aged 35-54 and those living in lower income neighborhoods. By linking multiple databases, the authors were able to identify a much larger cohort of individuals with IDD than if they had used a single data source. It also enabled the creation of a more accurate sociodemographic and clinical profile of this population as each source captured different segments of it.

Rapid repeat pregnancy among women with intellectual and developmental disabilities: a population-based cohort study

“…This definition was based on Ontario legislation 21 and clinical practice 8 and includes intellectual disability, genetic conditions resulting in intellectual disability (e.g., trisomy 21) and developmental disabilities (e.g., autism). 18 The resulting prevalence of intellectual and develop mental disabilities in Ontarian adults (0.8%) 20 is consistent with international meta-analyses. 8 From this cohort, we identified women with and without intellectual and developmental disabilities aged 18 to 49 years who had a live birth at gestational age of at least 20 weeks between Apr.…”

“…Using a unique encoded identifier, person-level sociodemographic and health data were linked deterministically; social services data were linked probabilistically with these data, on the basis of name, birth date, sex and postal code. 18 We extracted data from the Registered Persons Database (birth date, postal code, date of death), the Ontario Health Insurance Plan database (physician billing data), the National Ambulatory Care Reporting System (data on emergency department visits), the Canadian Institute for Health Information Discharge Abstract Database (medical and psychiatric hospital admission data), the Ontario Mental Health Reporting System (psychiatric hospital admission data), the Ontario Drug Benefits database (publicly funded drug benefit data) and the Ontario Ministry of Community and Social Services, now the Ministry of Children, Community and Social Services (Ontario Disability Support Program data). 18 These databases are valid for sociodemographic data, primary diagnoses and physician billing claims.…”

Health Surveillance and People with Intellectual Disabilities

“…The first task was to link information from across government sectors in order to study as representative a group of adults with intellectual and developmental disabilities as possible from across Ontario. Through linking information across different government sectors it is now possible to study how over 66,000 adults with intellectual and developmental disabilities use health care (Lin et al, 2014). Since creating this cohort, H-CARDD has explored the quality of primary care for adults with intellectual and developmental disabilities in Ontario, based on Canadian guidelines related to this population.…”

“…Coding accuracy is likely to vary as a function of a number of factors Iezzoni, 2002;Lin et al, 2014). These include the ease of identification of intellectual disability or particular conditions associated with intellectual disability (e.g., Down syndrome); professional awareness of these conditions; the nature and duration of the health-care contact; and the extent to which the identification of intellectual disability is considered to result in practical benefits to either the health-care system or the individual.…”

A Review of Health Surveillance in Older Adults with Intellectual and Developmental Disabilities

“…All data sets were searched from their inception. Further details regarding the data sets, the diagnostic codes used, and the linkage process are provided in Lin et al (2014) and Ouellette-Kuntz and Martin (2014).…”